Alaina Leary

If You’re Writing About Disability, You Need to Read These Guidelines

Posted on July 10, 2018April 13, 2023 by Alaina Leary

Sometimes I imagine what the media’s typical coverage of disability might say if it was written about me—covering the two proms I went to with my girlfriend in high school, celebrating my ability to graduate from college after almost failing the second grade and spending most of my childhood in physical and occupational therapy, or eulogizing me after death as inspirational “in spite of” my disabilities.

Media centering on disability often falls into a dichotomy of disabled people seen strictly as objects of either inspiration (“Look at what they can do with a disability!”) or pity (“Look what they can’t do, and how much of a burden this is on their community”). Every time I see this, I’m reminded of how little my humanity means to some people. I’m not really a full person, but reduced to this dichotomy.

When it’s clear that a journalist doesn’t understand what it’s like to be a part of the disability community, reading their stories feels like a gut punch. And they might quote parents and caregivers as sources, but not even speak to a single disabled person.

As a journalist, it feels natural to me to include disability in my own work because I have lived experience. But when I started tackling wider disability issues and including a disability lens in my general reporting, I wondered, “How can I make sure I’m actively not causing harm to other disabled people, whose experiences of the world and ableism might be very different from mine?”

Here’s a list that I use every time I’m working on a story, whether it has a central tie to disability issues or not. This list is just a starting point, but this is a shift that we currently need in reporting and media—and I’d like to see journalists across all types of media get on board with making these changes in their own work.

Reference the National Center on Disability Journalism’s language guide as a starting point, and continue to consult disabled people and disability rights organizations about inclusive, non-harmful language.
If you’re in the position to hire a disabled writer for your project, choose to do that. Disabled Writers is an excellent resource where you can find writers, sensitivity readers, sources, and editors.
Do thorough research in your reporting, and your due diligence. Read, listen to, or watch media created by and for people from the group you’re reporting on as part of your process.
Understand established biases about the larger disability community, and any specific sub-communities you might be writing about. Think about how your story will differ from existing stereotypes and tropes, and what biases readers will bring to it.
Whenever possible, center the disability community in your work. Although you’re writing the story, let them take center stage in the work—quote them directly, and include them in photos and multimedia content where appropriate.
If a story centers on one person or a group of people with disabilities, ask whether or not it would be newsworthy if those people were nondisabled.
Consider the eight central news values (proximity, timeliness, prominence, magnitude, conflict, oddity, impact, and emotion), and ask yourself how much of the story is about emotion. Is the story meant to tug at readers’ heartstrings and positioned as a tearjerker or a feel-good piece? How much of that has to do with the story being about a disabled individual or group of disabled people?
If the story is being covered because it’s inspiring or a feel-good piece, how does it fit into the overall canon of disability journalism? How does it compare with other stories about disability being covered (or not covered) by mainstream and independent media?
Stay away from phrases like “wheelchair-bound,” “confined to a wheelchair,” or other language that positions wheelchairs and other mobility aids as prisons or traps.
Actually interview disabled people. If you’re writing about a particular disability or a community of people with a condition, interview people from that community.
Don’t assume that people want to cure their disabilities, and ask about and include disability pride in your reporting.
Avoid language such as “suffering from” that creates a negative relationship between a person and their disability without confirming that is how an individual would like their disability described. Use neutral language whenever possible.
Make sure your writing and multimedia coverage is accessible. Use alt text, offer detailed captions and image descriptions, create captions and transcripts for videos and audio content, allow users to magnify your web content, and avoid flashing animations.
When appropriate, consider hiring a sensitivity reader or asking about a budget for sensitivity readers at your publication. A sensitivity reader is a person with a disability—ideally more than one person, and who share the specific disabilities and conditions you’re reporting on—who reads your work specifically for harmful and oppressive content. A sensitivity reader can help you parse through anything that might still need editing, such as problematic language or biased assumptions.
Do you, as a journalist, include disability in every beat or section of a publication? Do you consider a disability lens for everything you write, including health and fitness, pop culture, lifestyle, sex and relationships, sports? Is your publication including disability in every section, across different types of stories?
Go deeper than just this list. Every disabled person is an individual, so don’t make assumptions about how people would like to be identified (including preferences about naming their specific disability, or person-first versus identity-first language). Ask people to confirm their name, pronouns, and how they’d like you to identify—or not identify—their disability in the story.

Caregiving, Disability History and Culture, Media

About

Alaina Leary

About Rooted In Rights

Rooted in Rights exists to amplify the perspectives of the disability community. Blog posts and storyteller videos that we publish and content we re-share on social media do not necessarily reflect the opinions or values of Rooted in Rights nor indicate an endorsement of a program or service by Rooted in Rights. We respect and aim to reflect the diversity of opinions and experiences of the disability community. Rooted in Rights seeks to highlight discussions, not direct them. Learn more about Rooted In Rights

Click here to pitch a blog post to Rooted in Rights.

Asexual Disabled People Exist, But Don’t Make Assumptions About Us

Posted on June 28, 2018April 13, 2023 by Alaina Leary

“How do you have sex?”

“Are you even interested in dating?”

“Do you have any feeling ‘down there’?”

These are common questions that people with a range of disabilities, from Down syndrome to autism to paraplegia to cerebral palsy, will often hear from other people.

Disabled people are often assumed to be nonsexual on the basis of our disabilities. “People always make the assumption that being disabled means being asexual,” says Karin Hitselberger, an activist and blogger from Washington, D.C. This happens across the spectrum of different disabilities, and can be based on presumed mental health, physical ability, cognitive ability, emotional ability, and more.

Karin, like many disabled people, identifies as asexual—which is a valid sexual orientation, and not the same as being desexualized by nondisabled people. “Being somebody who identifies as high femme, I was afraid that identifying as asexual would make people see me as less of a woman and less of an adult.” As a society, our ideas about success, independence, and maturity are so deeply tied to gender and sexuality, like when people assume that it’s a crucial step to becoming an adult to find a romantic partner, settle down, and (usually) have children.

It’s challenging when you’re on the asexual spectrum and have a disability, because disability rights activists have been working to change the dialogue about disability and sexuality for years. I often hold back on bringing up that I identify as gray asexual, a term that describes fluidity on the asexual spectrum and in my case means that I rarely experience sexual attraction and it’s limited to a small group of people. Many people assume my sexuality automatically because I’m very open about my long-term relationship with my female partner.

“In conversations about disability, the myth that disabled people are non-sexual is commonly brought up,” says Erin Schick, an advocate and social worker in New York. “I want to be able to have these conversations in a more nuanced way that notes the existence of ace [shorthand for asexual] people.”

Disabled asexual people do exist. Although disability doesn’t automatically equate with asexuality, there are disabled aces who feel that their sexual orientation is connected to their disability. In the autistic community, there are people who feel that their asexuality has a relationship to the way they view and experience the world as an autistic person. Some people feel that their past trauma, PTSD, and other mental health issues directly impact their asexuality. And others with chronic pain and fatigue-related symptoms have said that these symptoms impact how they experience asexuality, whether it’s a fluctuating scale from day-to-day or more constant.

“My desire or ability (or lack thereof) to engage in romance or sex due to personal choice, pain, medical concerns or my being a pan gray ace, that’s all as valid as anyone else’s reasons, disabled or not,” says Emily Johnson, a social media and digital editor, designer, and poet in Atlanta, Georgia. “Abled people get too tired. Abled people experience pain. Abled people simply aren’t interested.”

Sexuality is deeply personal for everyone. I have several friends who identify as asexual, and none of us experience our asexuality in exactly the same way. It helps when we can avoid assumptions based on our own experiences or what we’ve been taught by society—so when sex is brought up in conversation, I don’t conclude that everyone in the group who hasn’t had sex eventually wants to. While talking to other ace friends, I remember that some asexuals have sex regularly, some never have sex, some occasionally have sex, and so on. We all experience our sexual and romantic lives differently, and the best thing we can do if we aren’t sure is to ask someone whether they’d like to share and then listen with empathy and understanding.

Relationships and Sex

About

Alaina Leary

About Rooted In Rights

Click here to pitch a blog post to Rooted in Rights.

If Your LGBTQIA+ Pride Event Isn’t Accessible to Disabled People, You’re Missing Out.

Posted on June 19, 2018April 13, 2023 by Alaina Leary

Like many other disabled people, one of the first questions I ask when I’m making plans is, “Will this be accessible?” And as much as I love going to celebrate at Pride events, the answer is often, “No, or pretty much no.”

Recently, the Stonewall Inn refused entry to a blind person and their service dog. The news didn’t surprise many LGBTQIA+ disabled people, as disheartening as that sounds, because we’re used to being left out of LGBTQIA+ spaces because of our disabilities. This happens when a queer bar is located up a narrow flight of stairs with no ramp or elevator. It happens when there’s an LGBTQIA+ slam poetry reading without an American Sign Language interpreter. It happens when there’s a march for our rights that doesn’t have another option to participate for people who can’t physically march or who need to sit and rest.

Pride events are inaccessible to many people. These events often include police and law enforcement presence, making them unsafe for people of color and religious minorities. It can be expensive to attend Pride, even though parades might be free to the public, because you need transportation there, food while you’re out, and money to spend on the after-parties, which often take place at bars and nightclubs.

“By being inaccessible, the community misses out on the beautiful diversity of all the members and it misses out on true equality because everybody is not being treated as equal,” says Karin Hitselberger, an activist and blogger in Washington, DC.

Emerson, a non-binary person with Ehlers-Danlos syndrome who is a wheelchair and rollator user, says they have run into numerous issues with Pride over the years. “I stopped going to Pride because there was nowhere to sit down to rest, it’s swelteringly hot, and all of the after-hours events are at bars that are largely inaccessible,” they say.

Now that Emerson has a diagnosis and mobility aids, they’re nervous about attending Pride events using a wheelchair or rollator. “I worry about maneuvering on the sidewalks, which are rough and cracked in some areas and don’t always offer enough room for people in wheelchairs to get behind everyone set up in camping chairs and standing three-deep to watch the parade,” Emerson explains.

As a cane user, I’m wary of Pride, too. I love the fanfare of a parade and crowds of people wearing rainbows and glitter, but it’s hard to move in a crowd like that—especially since I need to be able to sit down and rest in a chair with a supportive back after I’ve been standing for a while. It’s a challenge to even navigate the crowds because I have trouble with balance and spatial awareness, so I’m always bumping into people and losing my bearings. I’ve dressed my cane up so that it’s hard to miss (it’s lavender and adorned with glitter) so people will see me coming and give me space, but it’s such a packed event that isn’t always possible.

“Inaccessible events basically have invisible ‘Keep Out’ signs in the form of stairs, narrow doorways, strobe lights,” says Liz Moore, a disabled activist in the DC Metro area. “Disabled queer people exist, and we need community too.”

Alaina, a white thin femme person, standing with my girlfriend, a light-skinned Mexican femme, at Pride in Boston. Alaina is wearing a dress with rainbow castles all over it, and has her lavender cane with a rainbow flag attached. She’s wearing a floral shirt and holding a rainbow flag. They both have colorful beads around our necks. They’re both smiling at the camera.

I feel invisible in a lot of public LGBTQIA+ spaces like Pride, even though I have the privilege of being able to attend the celebration in Boston because of access to decent public transportation, the support of my friends and girlfriend (who help me carry heavy bags, or scope out seating), and financial independence to make choices like paying for a rideshare if I can’t walk long distances. This year’s Pride in Boston has a disability seating section, which is fantastic, but I’d also love for such events to go beyond basic access. I’d like to see LGBTQIA+ disabled people in leadership roles in the community, and being celebrated and honored, rather than being afterthoughts once most of the planning is finished.

Much like the LGBTQIA+ community, the disability community has a long history of being radical and creating powerful change that impacts our larger society (universal healthcare, anyone?). “Disability justice has its own traditions of radical resistance and crawling up the Capitol Steps,” says Liz. “We’re creative, and have this amazing tradition of access hacks. We also have expertise on issues that affect the broader LGBTQIA+ community. For example, queer elders are aging and want to be able to retire but still maintain independence. If you included disabled people in your activism, maybe you could learn from the independent living movement, say, or our experiences with guardianship.” The LGBTQIA+ community is missing out on a lot of fun, hardworking, and talented people when they don’t include people with disabilities. And it leads to erasing a whole section of the queer community by simply keeping us out of mainstream celebrations.

Making Pride truly accessible for disabled people means more than just finding ways to be ADA-compliant. It’s about including us from the beginning, and offering more than just one way to honor LGBTQIA+ history and culture.

Disability History and Culture, LGBTQIA+

About

Alaina Leary

About Rooted In Rights

Click here to pitch a blog post to Rooted in Rights.

May is Ehlers-Danlos Syndrome Awareness Month. Here’s What You Should Know.

Posted on May 23, 2018April 13, 2023 by Alaina Leary

When I tell people I have Ehlers-Danlos syndrome (EDS), they usually give me a blank stare or reply, “What does that mean?” Answering doesn’t clear up any of their questions, and it actually creates more: How did I get EDS? Have I always had it? What does it look like in my daily life? Will it get worse as I get older, or is there a cure?

The Ehlers-Danlos syndromes are a group of genetic connective tissue disorders that are separated into thirteen subtypes. It’s considered to be rare and most people have never even heard of it, so they don’t have a conception of what it means to live with it.

Many people with rare disabilities (and disabilities that are common but don’t have high public awareness) have to become expert self-advocates. We’re constantly in a position of educating people around us.

“I’ve had to become my own doctor, my own personal scientist, to get anything done,” says Annie Segarra, a YouTuber, writer, and artist who shares her experiences as a disabled queer woman of color. “It took years of pleading to be tested for EDS before I actually was.”

Kelsey Golden, a mother of four living in Omaha, Nebraska, says that she didn’t connect the dots to EDS until she saw it on an episode of Grey’s Anatomy. She spent eight months researching EDS and approached her physician with her medical history, diagnostic criteria, and case studies. He was skeptical at first, but her evidence quickly convinced him and she was diagnosed two weeks later.

People with rare conditions often spend a long period of time being undiagnosed. “I wasn’t diagnosed until just this year, at age 27, although I’ve had symptoms and have been looking for answers for my entire life,” says Courtney, a writer living in Arizona who has EDS and chronic Lyme. “I have a really classic case of EDS—I check off every symptom on a checklist—so it would be such a simple diagnosis if doctors were familiar with it.”

Since we’re waiting longer for diagnoses and doctors are less likely to be familiar with our conditions, we also don’t get a lot of the treatment and self-care tips that people with common disabilities (like diabetes) might get at an annual physical. I spent my childhood undiagnosed, so I never knew that I was better off not stretching out my hypermobile joints or contorting my body into odd positions. It was comfortable for me to position my body in ways that looked strange to my friends, and I didn’t realize I could be adding to chronic pain and connective tissue erosion down the line.

“I feel a little heartbroken when I think about the possible elements of my condition I could have prevented if I had known what I had earlier on and the only way that could’ve happened would’ve been through widespread awareness,” says Annie.

Aliska Shah, a queer South Asian writer and artist, was a professional swimmer for nine years, but was always injury prone because of her hypermobile EDS. Every couple months or so, she’d visit a physiotherapist, where she’d be told to stretch more often—which is actually counterproductive for people with hypermobile Ehlers-Danlos. “I live in a community where no one has heard of my condition, not even the doctors (I was diagnosed abroad), and I’m in a position where I have to constantly justify my reasons for quitting a promising professional career in swimming,” says Aliska.

In addition to advocating for ourselves at the doctor’s office, people with EDS often have to educate everyone in our lives, whether we’re in a social setting or a professional one.

While the reality is that people’s perceptions of common and widely known disabilities is often skewed and rooted in stereotypes, I often wish that more people had a basic understanding of EDS, because I’d at least have something to work from.

One basic but impactful thing people in my life can do is research what it’s like to have Ehlers-Danlos syndrome, ideally not only from a medical perspective but also by reading, watching, and listening to work by people with EDS (like Annie Segarra’s YouTube channel). When I find out that a friend has a disability or chronic condition, I’ll usually do research on my own and also invite them to tell me how it impacts their life if they’re comfortable. I make a point to remind them it’s not their job to educate me, but that I’d like to understand what accessibility means for them so I can be aware when we’re making plans.

Courtney says, “When I was first diagnosed, I mentioned it to a friend. We got off topic and didn’t talk too much more about it, but the next day he came up to me and said, ‘Hey, I read a little bit about EDS after you mentioned it. It sounds like it can be really rough! Let me know if I can ever help with anything.’ It was so simple and so appreciated.”

Awareness and education also helps significantly with myths about what it looks like to have a disability. “You would not believe how often I’ve been yelled at in parking lots or elevators for “being lazy” or “using my grandma’s parking pass,” because I “look perfectly healthy” (which is usually code for young),” explains Olivia Cline, a professor and editor living with Ehlers-Danlos syndrome and several other comorbidities in North Carolina. “I once had to actually take my shirt off in a parking lot to show the person berating me all my tubes and lines and scars.”

The best thing you can do if you have someone in your life with a disability—even if it’s not rare and you think you have a lot of common knowledge about is—is to not make assumptions. Do some research on your own. Read about what it’s like from first hand perspectives and other people who live with it. If you’re comfortable, ask that person to tell you a little about it, and then don’t interrupt them, don’t offer them suggestions for treatment or a cure, and just listen.

Activism and Advocacy, Health, LGBTQIA+

About

Alaina Leary

About Rooted In Rights

Click here to pitch a blog post to Rooted in Rights.

Activist Spotlight: Lillie Lainoff – Writer

Posted on May 17, 2018April 13, 2023 by Alaina Leary

Lillie Lainoff always wanted to be a writer. When she came home from her first day of kindergarten with her first short story—two sentences about a girl with a pet goldfish—she announced that this was what she wanted to do for the rest of her life.

“Something I’ve come to truly appreciate about our community is the variety of forms our activism takes,” explains Lillie, who didn’t always call herself as an activist as easily as she adopted the title of writer. “In my writing, the disabled body is not a symbol or a metaphor, or something frightening, but something natural. Most of all, I want to give disabled girls a chance to see themselves in the books they read.”

Lillie first began to see her writing as a form of activism when she published a piece on Hollywood’s representation of disability in the Washington Post. The online version of the article reached the number one spot on Outlook’s opinion section, and she began receiving responses from readers, both in the disability community and outside it. “I keep a number of emails from readers pinned to a corkboard above my desk,” says Lillie, “to remind me what I’m fighting for.”

A photo of Lillie Lainoff fencing at the Brandeis Invitational in 2016, where Yale went 5-0 and upset No. 8 St. John's in the process, 18-9. She is mid lunge, both her feet are off the ground.

A recent graduate of English at Yale University, Lillie mainly writes young adult fiction. Right now, she’s working on a historical fiction novel about a fencer who has postural orthostatic tachycardia syndrome (POTS) like she does, and draws inspiration from the challenges she has faced as a disabled athlete. Lillie was one of the first physically disabled athletes to individually qualify for an NCAA Championship in 2017, her final year of NCAA eligibility. “I’d been struggling with a serious back injury since sophomore year, so I prepared myself for this to be one of those goals that I needed to let go,” she says about her qualification. “But it ended so much better this way—I qualified at home in front of my family and friends.”

Her thesis while at Yale was a series of short stories about the intersection of disability and femininity, in the context of personal relationships. All the main characters in the stories are young women who are learning to navigate social expectations and their own bodies. Lillie hopes to apply for Master of Fine Arts programs for fiction writing next December, and in the meantime, she’ll be working on writing her novel (and fencing, of course).

Balancing her athleticism with her writing has always been a challenge for Lillie, since she was recruited for college as a varsity athlete. During her junior year, she was a fencing team manager, the managing editor for the Yale Daily News Magazine, a writing partner at the campus writing center, a writer for Yale Sports Publicity, and she wrote her novel, The Keeping House. Despite keeping so busy, one of the accomplishments she’s most proud of is fighting for accessibility in the application process for Yale’s creative writing concentration. As part of a student advisory committee, she pushed for a more inclusive admission process that made the concentration more open and less competitive.

Lillie is represented by Jennifer Wills and Nicole Resciniti of The Seymour Agency for The Keeping House, the first in a young adult speculative fiction trilogy about a world where the disabled are hunted and persecuted (with a cast of almost all disabled characters). It wasn’t the first book she queried, and she admits that writing isn’t always easy—in fact, it’s anything but, especially if you want it to be your career. Her advice to other writers, whether they have disabilities or not, is to keep trying and not give up when you receive rejection letters or radio silence from literary agents and editors. “I’d written other novels before, but never anything like this. It was never just a novel,” Lillie says, “It was a love letter to myself. To my body.”

To Lillie, her work is part of a larger movement for inclusive representation of the disability community in young adult fiction. “When we erase a group of people’s stories from literature, we’re telling them that their stories don’t matter,” Lillie explains. “For [children’s literature] and YA, this can have a huge impact on us as readers, given that these are the first stories many of us will ever read in our lives. I write YA disability rep because when I was a freshman in high school and dealing with a brand new diagnosis, I needed to know I wasn’t alone.” She thinks she might have identified with disability pride and as a disabled person earlier if she had seen herself represented in the media, in the books she read as a teenager.

She hopes that by telling these stories, she’ll give disabled teen girls permission to exist in a world that so often tells them they don’t.

Activism and Advocacy, Disability History and Culture

About

Alaina Leary

About Rooted In Rights

Click here to pitch a blog post to Rooted in Rights.

Disabled People Have the Right to Raise Children

Posted on May 7, 2018April 13, 2023 by Alaina Leary

I didn’t see many families like mine growing up. All my childhood friends’ parents had cars and could drive. My mom was visually impaired and had Ehlers-Danlos syndrome. She was the first person to teach me that I shouldn’t be ashamed of being disabled, and she almost lost her parental rights as a result.

Disabled parents often face issues of parental rights, such as the right to raise children, whether those kids are biological or adopted. Current research estimates there are 4.1 million parents with disabilities in the United States. Parents with disabilities are at risk of having their children removed from them, and removal rates are as high as 70-80% for psychiatric disability and 40-80% for intellectual disability, with 13% of parents with physical disabilities reporting discrimination in their custody cases.

Heather Watkins is a parent who has muscular dystrophy, and she serves on the advisory board of National Research Center for Parents with Disabilities. “Disabled people should have the right to raise children,” she proclaims.

While many would jump to the conclusion that disabled parents aren’t equipped to raise children, there are so many benefits to growing up with a disabled parent.

Katie Tastrom, a disability lawyer who is a disabled parent herself believes that disabled parents teach their kids to be more adaptive. “The main thing that I think is different due to my disabilities is that [my kids] do more things for themselves than they would have otherwise, such as laundry and cooking (age appropriate of course),” she says. “It has actually worked out well because they have a lot of skills for independence that they would not otherwise have.”

When I was growing up, my mom and I walked to the grocery store because she couldn’t drive, and she taught me how to set reminders on my phone so I wouldn’t miss appointments or forget to do my homework. Children of disabled parents get an early introduction to life skills, whether it’s learning how to do something differently or becoming more self-sufficient.

Because both my mom and I were disabled, I became independent by helping her with household tasks like doing the dishes, and she taught me how to adapt to my environment. I couldn’t go outside in cold weather for as long as my friends could due to the side effects of Raynaud’s syndrome, and she modeled dressing in warm layers and taking breaks to go inside to show me how she survived New England winters.

Many families without any disabled family members tend to think of neurotypical and able-bodied as the norm for parenting. “I believe we need to see more disabled parenting across the media landscape so it becomes part of the collective consciousness,” says Watkins. “We need to show family dynamics and how disability adds dimension to parenting, benefit from having disabled parent(s) and how adaptive, out-of-the box thinkers many disabled parents are.”

In addition to struggling to get or retain parental rights at all, disabled parents also face the inability to make choices about how they parent their kids. My mom faced this when she was raising me, because many educators wanted her to place me in Applied Behavioral Analysis (ABA) therapy and teach me to reduce or eliminate some of my autistic behaviors, such as stimming by rocking my feet and flapping my hands. My mom refused to do this because she saw how painful it was for me not to stim, especially when I was brainstorming for school assignments or the creative projects I did for fun.

ABA therapy has since become controversial, especially among autistic self-advocates, but at the time, my mom’s ability to parent was called into question because of her refusal. After home visits with a social worker, she was ultimately found completely fit to take care of me, but the experience was traumatizing for both of us. She wanted the ability to make the choice she thought was best for me, which is something that non-disabled parents are automatically entitled to.

Instead of taking away disabled parents’ rights, we need to make sure disabled parents have access to the resources they need to parent effectively.

Disabled parents frequently rely on their own expertise on access and accommodations. For instance, Lisa Goldstein installed her own video monitors when her kids were younger with flashing lights to indicate when they cried, and taught her children from the beginning to face her when they speak. My mom walked me to and from school when I was too young to walk alone or with friends, and she and I would take breaks when we went on long walks for fun or with a purpose. It would be great if parents were given access to resources to make parenting even easier, though.

Disabled parents shouldn’t be shamed or worried about losing their parental rights when they ask for help. My mom didn’t have money for frequent taxi rides when she was raising me, but it would have been great if an educator or a disability organization could have connected her with information about paratransit options or public transportation discounts for people with disabilities.

Heather Watkins suggests that disabled parents should have adequate support systems that include other disabled parents. These kind of groups would allow disabled parents to swap stories, share best practices and tips, offer advice and recommendations, and share frustrations the way non-disabled parents do with one another.

Disabled parents have just as much to offer their children as non-disabled parents do, and we need to create societal support for accessibility and accommodations so that all parents have access to the necessary resources for their children.

Disability History and Culture, Family

About

Alaina Leary

About Rooted In Rights

Click here to pitch a blog post to Rooted in Rights.

15 Autistic Activists You Should Follow This Autism Acceptance Month

Posted on April 26, 2018April 13, 2023 by Alaina Leary

It was around late 2012 or early 2013 when I first stumbled across the #ActuallyAutistic community online. Before I found the community, my ideas about what it means to be autistic came from my personal experience or from limited and often stereotypical portrayals in the media.

Reading, listening to, and joining that autistic community online was an incredibly fulfilling moment for me. Other autistic activists were the ones who taught me that I should be proud, not ashamed, of being autistic, and that we deserve to speak for ourselves instead of always being spoken over by our family members, medical professionals, and caregivers. Autistic activists helped me “come out” to my partner and friends as autistic.

Whether you’re autistic and looking for a stronger sense of community and to learn about perspectives outside your own, or you’re not autistic and want to support us in autism acceptance, the following list of activists can serve as a starting point. You can also search the #ActuallyAutistic or #AutismAcceptanceMonth tag on social media platforms, read my Activist Spotlight series (which includes many great autistic people, although it’s not limited to only autistic activists), check out #FollowFriday and other “who to follow” recommendations from the autistic community, and make a point to follow multiply marginalized autistic people.

1. Lisa J. Ellwood
Lisa J. Ellwood is an autistic and bipolar Lenape and Nanticoke Indian writer. She’s a journalist for Indian Country Today. You can follow her on Twitter, on her blog, or on her website.

2. Mike Jung
Mike Jung is a children’s book author and founding member of We Need Diverse Books. You can follow Mike on his website and on Twitter.

3. Shain Neumeier
Shain Neumeier is an autistic activist and attorney. Their work focuses on disability and transgender law. You can follow Shain on their website and on Twitter.

4. s.e. smith
Rooted in Rights writer s. e. smith is an essayist, editor, and journalist, and one of the founders of Disabled Writers, a website dedicated to increasing disability representation in media, journalism, and publishing. You can follow s.e. on their website, on Twitter, on Facebook, and on Instagram.

5. Corinne Duyvis
Corinne Duyvis is a science fiction and fantasy author, co-founder and editor of Disability in KidLit, and creator of #OwnVoices (often used to discuss books by authors who share their characters’ marginalized identities), You can follow Corinne on her website, on Twitter, and on Tumblr.

6. Lydia X. Z. Brown
Lydia X. Z. Brown is a writer, organizer, activist, and speaker. They were the lead editor behind All the Weight of Our Dreams, the first-ever anthology of writings and artwork by autistic people of color, published in June 2017. You can follow them on their website, Facebook, and Twitter.

7. Amythest Schaber
Amythest Schaber created the blog Neurowonderful and the YouTube channel Ask An Autistic, where they answer common questions about autistic experiences like stimming and sensory processing. You can follow Amythest on Facebook and Twitter.

8. Morénike Giwa Onaiwu
Morénike Giwa-Onaiwu is a Black autistic woman who is an autism and racial justice advocate, writer, and educator. You can follow Morénike on her blog and on Twitter.

9. Sara Luterman
Sara Luterman is the founder and editor of NOS magazine, a news and commentary source for thought and analysis about neurodiversity culture and representation. You can follow her on Twitter.

10. Marieke Nijkamp
Marieke Nijkamp is a young adult author, the founder of DiversifYA and a founding senior vice president of We Need Diverse Books. You can follow them on their website, on Twitter, on Instagram, and on Tumblr.

11. Cynthia Kim
Cynthia Kim created the blog Musings of an Aspie, and founded Stimtastic, an autistic-run online store that sells stim toys. You can follow her on Facebook and Twitter.

12. Kris Guin
Kris Guin is the founder of Queerability, a blog that explores the intersections between LGBTQ and disabled identities, and a former staff member at Autistic Self-Advocacy Network. You can follow Kris on Facebook and Twitter.

13. Robin M. Eames
Robin Eames is an autistic and queercrip artist, writer, activist, academic, and mythographer. You can find Robin on their website, on Twitter, and on Instagram.

14. Ellen Murray
Ellen Murray is an autistic trans woman, a Northern Irish rights expert, and the founder of GenderJam NI. You can find Ellen on her website and on Twitter.

15. Manuel Díaz
Manuel Díaz is a physicist and the founder and president of Texas Neurodiversity at the University of Texas at Austin. He has written and translated a number of pro-neurodiversity articles at his bilingual English- and Spanish-language website, Neurodivergencia Latina. You can follow Manuel on Facebook and Twitter.

Activism and Advocacy, Autism and Neurodiversity, Caregiving, Disability History and Culture, LGBTQIA+

About

Alaina Leary

About Rooted In Rights

Click here to pitch a blog post to Rooted in Rights.

Don’t Use “Functioning Labels” to Victim-Blame Me

Posted on April 19, 2018April 13, 2023 by Alaina Leary

Content note: this post discusses sexual abuse and rape.

When people find out that I survived a rape and my assailant was a woman, their tone often immediately shifts from sympathy to disbelief or confusion: “How could a woman rape you?” Besides the fact that this question erases sexual violence in the LGBTQIA+ community, it’s also an assumption that completely ignores my physical disability and the fact that I’m autistic. Non-disabled people often make biased, quick judgments about my capabilities, and don’t understand why I wouldn’t be able to physically escape a sexual assault if my rapist was female. I can often walk unassisted and only recently began using a cane, so people jump to the conclusion that I am a “high-functioning” disabled person.

Functioning labels, a concept that originated in the autistic community, are often used by non-disabled people to define the capabilities of disabled people. In the autistic community, people are generally split into categories—high-functioning and low-functioning—based on factors such as verbal ability, ability to live independently, and academic ability. Functioning labels are used to deny disabled people accommodations because they aren’t “disabled enough,” or deny them independence and free choice because they’re “too disabled.”

And functioning labels can be weaponized against disabled sexual violence survivors, particularly people with developmental and cognitive disabilities, highly stigmatized mental illnesses, multiple disabilities, or who communicate without using traditional verbal speech (like AAC users or non-verbal autistic people). They’re intrinsically a part of the way that disabled survivors are victim-blamed for our experiences.

“I’ve been told I was too mentally ill to understand what had really happened with my abuser,” says Victoria Lee, a fantasy author. “I’ve also been told, in the years since, that I am way too calm and composed while discussing my abuse. I never get the sense, when people say that, that it’s a compliment. What they mean is: Real victims would cry, real victims are broken, real victims can’t discuss their victimization.”

When it comes to disability, functioning labels aren’t a useful indicator of a person’s abilities and needs. It’s more accurate to describe exactly how someone’s disability impacts them—for example, because I have Ehlers-Danlos syndrome, I have low muscle tone and am prone to injuries—than to label someone as high- or low-functioning. When I’ve talked to people outside the disability community about how challenging it was for me to take a basic self-defense class, they sound skeptical, like they’ve already made assumptions about how my disability impacts my life and this doesn’t fit that image.

But these inaccurate labels are often used to deny survivors due process, including on college campuses, where research shows that 1 in 3 disabled women are the victims of sexual assault. For instance, when I initially reported my rape, which happened on a public university campus, to the campus police, the officer made me doubt myself. She questioned my abilities extensively, asking why I wasn’t physically able to get away from my female attacker and whether I’d had any alcohol that night. She only switched gears and seemed to believe that a woman could rape me when I explained that I was fairly certain I’d been drugged before it happened.

I’m hesitant to bring up the fact that I’m autistic when I talk about my history as a sexual assault survivor, even in circles where I feel comfortable discussing how my physical disability plays into that. People have asked me questions like, “Did you understand what your abuser was doing at the time?” and, “How can you be sure that she meant to assault you?”

People who are blaming the victim often turn to functioning labels, or assumptions about a disabled survivor’s abilities, to shift the blame off the abuser.. Denarii Monroe, a blues singer-songwriter, writer/editor, poet, screenwriter, and activist living with multiple disabilities, was sexually harassed a few months ago by her primary care physician’s colleague while her PCP was on vacation. “When she returned, I told her what happened and, essentially, she didn’t believe me,” says Denarii. “She chalked it up to me being overly sensitive and misinterpreting things because there was no way that this man she’d known for so long could do something like that.” Even relationships between friends, romantic partners, colleagues, and peers can have a power imbalance, because if you’re disabled or mentally ill and your abuser is not, they’re more likely to be believed and taken for their word. Phrases like ‘overly sensitive’ and ‘misinterpreting’ cast doubt that the disabled or mentally ill survivor fully understands their own experiences, solely or partly on the basis of their disability.

The victim-blaming response is, unfortunately, fairly universal for sexual violence survivors, but it’s weaponized in new ways against disabled survivors. We’re not only questioned on what we were wearing and whether we were drinking alcohol, but also things like how well we can hear our surroundings, whether or not we can walk, our emotional reactions after an assault, and how physically capable we are of performing the moves taught to us in Rape Aggression Defense programs at college.

Functioning labels are so often used against survivors when we come forward, not only formally, but also just in telling people in our communities and social networks about our experiences. We’re doubted, disbelieved, and treated with skepticism. We need genuine empathy for survivors with disabilities, and support systems who will advocate for these survivors: Lawyers, counselors, physicians, and more who will walk them through the process of healing and, if they want to, formally reporting their assault. Until we get there, the disability community will still be fighting for our place in the #MeToo movement.

Disability History and Culture, LGBTQIA+, Mental Health, Sexual Harassment and Abuse

About

Alaina Leary

About Rooted In Rights

Click here to pitch a blog post to Rooted in Rights.

Autistic People are Taking Back Autism “Awareness.” It’s About Acceptance.

Posted on April 17, 2018April 13, 2023 by Alaina Leary

As a joke a few years ago, I posted on April 2 (widely celebrated as World Autism Awareness Day), “I think you’re all aware, but I’m autistic.” I was sick of seeing photos of non-autistic people on fundraising walks for autism awareness and explaining why many autistic people wouldn’t want a cure even if one were available. I was exhausted because although from the outside it sounds like Autism Awareness Month should be all about autistic people, it’s actually not—and I’m always invisible in conversations about my own disability.

Every April, people pull out their blue clothing and puzzle piece memorabilia to honor Autism Awareness Month, which was started by the Autism Society in 1970 to educate communities and spread public awareness about autism. Since then, the autistic community has spoken up about some of the problems with how this month is celebrated—including its ties to the organization Autism Speaks (that were basically created by Autism Speaks with campaigns like “Light It Up Blue”) and their history of disrespecting autistic people, and its focus on awareness instead of any actionable shift in how autistic people are treated.

In 2011, autistic people decided to take back Autism Awareness Month, and Paula Durbin Westby organized the first Autism Acceptance Month in response. Westby chose the word “acceptance,” which conveys a shift in thinking or in action, and goes beyond just being aware that autistic people exist. It’s about equal rights and justice for the autistic community, treating autistic people with autonomy and respect, and adopting a “nothing about us without us” mindset that autistic people should be at the center of conversations about autism.

“The word ‘acceptance’ is much stronger than ‘tolerance,’ especially the begrudging sort of tolerance I saw so often,” Westby said in an interview on AssistiveWare. “I stated in my original writings about Autism Acceptance Day that acceptance does not mean ‘I accept you, but not your autism.’ Acceptance is: pro-neurodiversity, a focus on supports and services tailored to the needs of the Autistic individual, rejection of cure-oriented projects.”

Autism awareness rarely goes beyond just basic education, and is often steeped in stereotypes and misinformation about autistic people. The fact is that if you’ve met one autistic person, you’ve met one autistic person: We are all individuals and autistic acceptance and inclusion needs to be treated like a complex, multifaceted solution.

We need autism acceptance because autistic people are at a higher risk of homelessness, substance abuse, unemployment and underemployment, incarceration, domestic violence, and other systemic issues that exist because we live in a society that doesn’t accept autistic people. We need autism acceptance because Applied Behavioral Analysis is still a leading therapy for autistic children, despite how many autistic activists have talked about how cruel the practice can be. We need autism acceptance because autistic kids and adults are punished by the education system just for being ourselves—like when my elementary school teachers forced me into time outs because I wasn’t capable of doing my work without stimming, a repetitive movement common in the autistic community that allows me to focus my creative energy and mitigate any sensory overload.

If you want to support the autistic community in creating autism acceptance, you can start by listening to us. Ask us what we need as individuals, and create space for radical access in your social spaces, workplaces, schools, organized events, and more. Are there ways that your spaces could be more accessible to the autistic people in your life and community? Access isn’t a one-size-fits-all situation, so it’s also important to make it clear that the burden isn’t on autistic people to ask for what we need, but that there’s an open line of communication between all parties. When I’m planning an event for friends, for example, I’ll give everyone several varied options or I’ll ask an open-ended question like, “I was thinking of getting Italian food together in the afternoon. Does that work for everyone?” or “Is there a movie that’s out that anyone wants to see?”

Prioritize and center autistic voices—not just during April, but any time there’s a conversation about autism or that impacts autistic people. Don’t talk over us or make assumptions. If an autistic person tells you that they need something or they aren’t able to do something, believe them and offer any support that you can.

Autism Acceptance Month exists because of autistic activists, and it’s time for the non-autistic community to take actionable steps toward a more accessible and inclusive society. The future of autism acceptance is a world where allies are willing to challenge their own internalized ableism and assumptions about what it means to be autistic. It’s a world where autistic people are radically included in spaces that are meaningfully accessible to us, and we don’t have to fight to have our needs respected or supported. It’s a future that I’m excited for, and the first step is actively supporting the autistic community during Autism Acceptance Month and beyond.

Autism and Neurodiversity, Disability History and Culture

About

Alaina Leary

About Rooted In Rights

Click here to pitch a blog post to Rooted in Rights.

Activist Spotlight: Wendy Lu – National Reporter and Editor

Posted on March 6, 2018April 13, 2023 by Alaina Leary

Wendy Lu started working on reporting for what later became her New York Times feature “Dating With a Disability” while she was still enrolled as a graduate student in Columbia University’s journalism school. It was originally her master’s degree project and took six months to complete, as she developed the story with women around the country who have varying forms of muscular dystrophy.

The initial project was in photojournalism, and Wendy hopes to use her remaining over 40 photos and reporting to create an Instagram photo project. She’s also interested in potentially submitting the photos for publication or display in a photography showcase. If she has the chance, she’d love to do additional reporting to complement what she still has and, as she says, there are so many angles to the topic of dating with a disability.

In addition to her work for the New York Times, Wendy has written for outlets like Teen Vogue, Bustle, Men’s Health, Columbia Journalism Review, Newsday, and others. She’s mainly focused on disability issues, sex and relationships, politics, women’s health care, gender dynamics, profiles, pop culture, and New York City local news.

“I absolutely think that newsrooms need to hire more people with disabilities, and cover disability across all beats,” says Wendy. “It doesn’t belong in just one section. There’s a disability angle within every story within every beat that you can think of.”

A Chinese American woman with glasses and a tracheostomy tube smiles at the camera, wearing a red and blue plaid shirt and blue jeans with a thin belt. She is wearing a black audio headset and holding up a padded microphone in her right hand and a black recorder in her left hand. She's sitting in a classroom with Mac computers and students sitting or bustling in the background.

Currently, Wendy is working on a variety of projects. She’s the director of internal affairs at Monstering Magazine, a literary magazine for disabled women and non-binary people. She’s one of the panelists at the 2018 New England Newspaper & Press Association Convention, covering how journalists should report on the disability beat, which was inspired by her piece for Columbia Journalism Review about the same topic. She’s also working on a memoir about what it was like to grow up as a Chinese American disabled woman, which she plans to finish by her birthday in June. And, of course, she’s reporting—topics she’s working on include #MeToo, online dating, women’s wrestling, and politics.

In the future, Wendy would like to pursue reporting outside of the United States, ideally in China or Hong Kong. She’d also like to do journalism in a local U.S. newsroom in a geographic area that’s typically underreported. Her longer term goal is to work for a national publication as a senior disability/health reporter. “There aren’t a lot of media outlets that are recognizing disability as a real beat and only a couple handfuls of identity editors,” she explains. “I think the news industry still needs to catch up in terms of learning how to report on different communities.”

Wendy will sometimes bring up her disability with her sources, especially when she’s reporting on disability issues. As a reporter, she believes creating a sense of trust with sources is crucial. Sometimes her sources will notice her tracheostomy tube and ask about it. She has also faced stigma as a disabled journalist. On one occasion, while she was visiting a prominent newsroom with her graduate school classmates, a senior reporter looked at her and asked, “What happened to you?” when he noticed her trach tube. It was a disappointing and disorienting experience for Wendy, but in her words, experiences like this also remind her why the work she’s doing is so important. Her stories, like this one about the microaggressions people with disabilities face regularly, have the potential to change social attitudes about disability and educate non-disabled people about issues like ableist language.

“I’m somebody who has to deal with these systemic barriers and everyday ableism, and that really sucks, but it also reminds me why I have to keep doing the work that I do,” she says.

As a journalist who reports on disability issues, Wendy is also keenly aware of what it means to be a balanced, unbiased reporter. Even though she’s a disabled journalist, she recognizes that the disability community is not a monolith and she doesn’t speak for everybody. While talking to sources, she’s careful to ask unassuming questions, and she takes the time to be aware of her own biases (including ones she didn’t realize she had). And she always asks sources how they would like to be identified in a story, so it’s their choice what language represents them.

Since Wendy’s piece about dating with a disability came out in the Times, she has done more work in sex and relationships reporting. “In the past I’ve felt kind of shy about reporting on sex and relationships,” says Wendy, although she’s gotten significantly more comfortable and confident and describes it as her secondary beat. “It’s really fun. You learn so much about interpersonal dynamics and social interaction.”

To brainstorm ideas for pieces, Wendy explains that she’ll consume a piece of breaking news and ask herself: What’s missing here? Whose story isn’t being told? She recently tackled the breaking news about Wonder’s Oscar nomination in this exact way: After thinking about the issue, she pitched it to Bustle and spent the night drafting the piece. According to Wendy, “In this whirlwind of breaking news, every outlet is reporting the exact same thing when it happens. At the same time, I wish we could all take a step back and think, ‘What does this mean?’”

It took Wendy time to figure out what her disability means to her—and it’s something she’s still figuring out. Once she better understood her own identity and began writing about it, she realized this was something she wanted to keep doing.

“What am I doing if I’m not trying to change things?” Wendy says, and that question sums up her work as a thorough journalist who believes that she has “so much left to learn” and is committed to reporting the truth. “I’m trying to challenge the status quo and challenge narratives.”

Activism and Advocacy, Disability History and Culture

About

Alaina Leary

About Rooted In Rights

Click here to pitch a blog post to Rooted in Rights.

Dating and Disability: Navigating Life Together in an Unaccommodating World

Posted on February 14, 2018April 13, 2023 by Alaina Leary

When I was picking out my first cane almost two years ago, my partner did all the right things—she showed up and listened to me. She helped me work through some of the internalized ableism I had about using a mobility aid by reassuring me that I shouldn’t be embarrassed and that I was making a positive choice. She accompanied me on my first few trips out of the house using it, and when we navigated public transit together, I felt safe and confident that I had a great support system on my side.

We all deserve significant others who respect and support us unconditionally, but it can be hard to find a partner who gets it (or is willing to learn). “I told him during our first date that I was dealing with some health issues and he could either come along for the ride, or not,” says Lizz Schumer, a writer from New York City who has fibromyalgia, about the man who is now her husband.

When you’re a disabled person and your partner isn’t (or even if they are, but you don’t have the same disability), it often involves a lot of educating and emotional labor on the disabled person’s part. Andrew Gurza, the host of Disability After Dark, a podcast about sexuality and disability, finds this happens to him often when it comes to date planning. “All of that leg work with respect to what is accessible is bound to fall on me,” he says. “I am the one who has to figure out accessible transit, I have to call ahead and know what restaurants or bars my accommodate me and my chair.”

Disabled people often have to deal with skepticism and partners who aren’t willing to understand or accommodate our needs. Rachel Rose, a chronically ill sex educator and graphic designer who runs Hedonish, an educational blog about chronic illness and sexuality, says, “The best way that romantic partners can support me is to be understanding when it comes to accommodating my fragrance sensitivities. I’ve had people in my life that have made me feel like I was a burden for asking them not to use certain products around me.”

Disabled people need our partners to put in their share of the effort around unlearning harmful stereotypes and assumptions about the disability community, accessibility, and accommodations. Their first step should be to listen and empathize. My partner and I, for example, spend a lot of time talking about the way disabled people who use mobility aids are treated. She doesn’t know what it’s like to get on a crowded train with a cane and find that everyone is staring at her, but she’s willing to listen to how that feels for me. “Although he’s encouraging in all things, he never questions how I’m feeling on a certain day, whether my pain or exhaustion can be ignored, or whether I’d be capable of more if I pushed harder,” Vix Jensen-Collins, a writer, activist, and creator with cerebral palsy, says about her husband. It sounds simple, but many non-disabled people aren’t willing to actively listen when disabled people are talking about our experiences. They already have existing assumptions about our bodies, minds, and abilities.

For the disabled partner, this means we need to be honest about where we’re coming from as much as possible. The vulnerability that can often stem from to sharing what our experiences are like with a non-disabled partner can be difficult, but it’s important if we want them to understand what we’re going through. With my partner, I try to describe what I’m feeling; I might say that I’m in a lot of pain, but it’s mainly my upper body and walking is fine. Or I’m not in pain, but my stomach hurts. Lizz explains, “If I’m having a high pain/fatigue day and don’t feel up to something (whether that’s a planned outing or just household responsibilities), it doesn’t help Nick support me if I don’t share that with him. That openness and communication—admitting when I need support—is something I’m continually working on.”

As the disabled partner of an able-bodied woman, I often think about what it means to be independent in a relationship. My partner and I live together and share responsibilities such as household chores, paying bills, and cooking meals. There are tasks I can’t physically do, like shoveling out my car after a blizzard or any heavy lifting. We have open conversations about managing those minutiae, based on a combination of who’s able to do a task, who might enjoy it or be better suited for it, and who has the most free time and energy.

Sossity Chiricuzio, a queer working class crip femme storyteller who lives in Portland, OR with her partner, has a similar process, and says, “We recognize emotional labor and management as well as physical chores, and work towards the best balance in that moment.” There’s not one system that works for every partnership, and it all depends on the people in the relationship to decide what will work best.

It can also be emotionally exhausting as a disabled person to deal with any limitations we have, especially if those interfere with a non-disabled partner’s view of romance. It helps when our partners are willing to adapt. “I had a date recently on a really terrible pain day; it was just one of those days where you wake up and immediately want to go back to sleep so you don’t have to experience being in your body. But my date came over, and ran me the most perfect epsom salt bath. Then they read me queer fairy tales while I took a bath,” says Liz Moore, a queer disability justice activist.

It’s invaluable to me when my partner is willing to adapt in similar ways. That can look like rescheduling our plans to go grocery shopping and staying in with delivered food and a movie, or offering a shoulder massage and low key plans when I’m in pain. What’s really critical is that she listens uncritically and believes me; if I tell her I’m extremely fatigued even after sleeping for twelve hours, she doesn’t ask me how that’s possible (because the answer is, of course, that I have Ehlers-Danlos syndrome and autism), she asks me how she can support me.

Non-disabled partners need to be understanding in a variety of situations, whether it’s in accessibility planning or navigating life together in an unaccommodating world. My partner and I like to go to the gym together because low impact cycling and swimming are great exercises for me, but when I’m unable to go, she’ll make the trip without me. And she doesn’t make assumptions about anything—if I’ve been laying low because of pain for a few days, she’ll ask me first before jumping to the conclusion that I’m not up for a walk to the beach or a scheduled errand. It’s essential that our partners listen, believe us, empathize, and support us in whatever ways we need; that’s what non-disabled people in romantic relationships expect, and it shouldn’t be any different for someone with a disability.

LGBTQIA+, Relationships and Sex

About

Alaina Leary

About Rooted In Rights

Click here to pitch a blog post to Rooted in Rights.

Activist Spotlight: Sam Dylan Finch – Educator, Editor, Storyteller, and Musician

Posted on February 9, 2018April 13, 2023 by Alaina Leary

Sam Dylan Finch got his start in activism after he survived a suicide attempt at age eighteen. He began by performing music he wrote about mental illness, stigma, and abuse at local rallies. “I found that, by being visible as a survivor, people were able to step forward and share their stories, too,” he says. “My music was creating a sense of safety. That’s where I first learned the power of radical vulnerability.”

Although Sam’s current work focuses more on storytelling and community-building than music, the social justice framework is still there. And a lot of the work he does now still focuses on mental health and trauma, particularly as it impacts queer and transgender people. Sam has worked as an editor and journalist for platforms like Everyday Feminism, The Body Is Not an Apology, RESIST Media, and most recently, Upworthy. His work has been published by outlets including The New York Times, The Huffington Post, Rewire, The Establishment, Wear Your Voice Magazine, and many more.

He’s also well known for his blog, Let’s Queer Things Up! (LQTU!), which he founded in July 2014. Sam started LQTU! right after moving across the country to San Francisco, California for graduate school. “Naming the blog ‘let’s queer things up’ meant that I was ‘queering’ every topic that I tackled,” Sam explains.

“My queer identity is inseparable from every experience I have.”

Let’s Queer Things Up! quickly went viral, amassing worldwide readers and ushering Sam into the spotlight. He believes it had to do with the cultural moment at the time—that we were in what has come to be known as a personal essay boom, when the Internet and readers rewarded marginalized folks for being vulnerable, often by hashing out our trauma in public ways. Many other marginalized people who broke into the industry in similar ways didn’t later become editors, as Sam has, and continue to struggle in placing their work with paying publications.

“I became an editor because there’s a very distinct lack of diversity in editorial roles, which means the playing field is uneven and will continue to be until we get marginalized folks higher up on the ladder,” Sam says. “I’m trying to push back on an industry that, for too long, has had editors that are simply not a reflection of the communities they’re reporting on.”

Sam Dylan Finch, a white femme and trans man, is shown here wrapped in a scarf and looking off to the side with his eyes nearly closed. He's smiling.

In the upcoming year, Sam wants to expand the vision for LQTU! and reach more people who need gentleness and affirmation, particularly those who experience stigma due to mental illnesses. As someone who has obsessive compulsive disorder and borderline personality disorder, Sam believes in not only talking about what’s challenging about life with these disorders, but also affirming, uplifting, and inspiring people.

“No one teaches us how to take care of ourselves, how to combat all the internalized garbage that our society is teaching us about ourselves and our identities,” he says. “I’m a happier person than I was—maybe the better way to describe it is more whole—and I think sharing the tools, insights, and affirmations that have helped me get to this place is something I want to focus on.”

In all of his work (as well as his personal life), Sam practices radical vulnerability; he’s open and honest with his readers, showing them insight into messy parts of his journey.

“Radical vulnerability is an antidote to a landscape that tries to obscure our stories and our experiences,” according to Sam, and it’s important for people to be able to see stories that mirror their own in digital media.

Readers are following Sam in real-time, through things like his mental illness diagnoses, transitioning, and self-care as an activist. Sam says the process has been surreal, particularly because he started his blog without thinking twice about how honest he was being in his writing, and he says, “They get to watch someone’s process, their struggle, and learn along with me.” It does get weird at times; his current therapist read his blog before they ever worked together, and Sam has gone out on dates with people who knew more about him than he did about them.

One of Sam’s goals is to write a memoir. He knows that his is a story that would require more nuance than a blog post (or even a series) would have space for, and that the full story is complicated and messy.

“We so rarely get books like that, people like me—queer/trans, mentally ill, traumatized—in their full humanity,” Sam says. “Even if the picture isn’t always flattering, even if the picture is sometimes scary or difficult to swallow, that’s exactly the reason why I want to tell it. Particularly as someone with borderline personality disorder, my humanity is denied all the time.”

Sam gets emails and messages regularly from readers who have connected positively to his work, and he’s most gutted when folks tell him they’re choosing to stay alive because something he wrote offered them hope. “I want to break this cycle of queer/trans and mentally ill youth coming up in the world, questioning if they should be here,” he says. “You do belong here. And more than that, we all have value, inalienable and undeniable worth. Every single time someone tells me that I’ve made them feel that, even for just a moment, is the greatest honor I could ever imagine.”

Activism and Advocacy, LGBTQIA+, Mental Health

About

Alaina Leary

About Rooted In Rights

Click here to pitch a blog post to Rooted in Rights.

Celebrating the Past and Fighting for the Future of the Independent Living Movement

Posted on January 23, 2018April 13, 2023 by Alaina Leary

When Judith Heumann met Ed Roberts, founder of the Independent Living Movement, she was in New York working with Disabled In Action, the civil rights organization she founded to fight discrimination against the disability community. At the time, Disabled In Action was involved with a variety of issues, all with the goal of advancing disability rights as a civil rights issue, according to Heumann.

“Ed and I were close friends from the time that we spoke on the phone,” says Heumann, who moved to Berkeley, California, and co-founded the Center for Independent Living at the University of California, Berkeley with Roberts. Heumann describes this time as a tipping point for the disability community, when disabled activists began collectively fighting for disability rights as a civil rights issue. Previously, society considered disability primarily from the medical model, and treated it as an problem that needed a cure. “There were disabled people who really wanted to come together and work across disability perspectives, and wanted to be able to be loud and proud and constructive in enforcing policy change,” Heumann remembers. “And at the same time, it was an opportunity for people to come together. It was very empowering.”

Heumann describes it as a time when disability activists had their pick of disability rights issues to work on—everything from fighting institutionalization, to pursuing education reform, to combatting sheltered workshops—and there were no national or state laws preventing discrimination of disabled people. There was no Americans with Disabilities Act, public transportation wasn’t accessible, and there were thousands of disabled children not in school. “It was an important time for people to realize that we needed to take our power,” explains Heumann.

Along with other activists, Ed Roberts formed the Rolling Quads group and fought for UC Berkeley to create a Disabled Students Program, a resource for students with disabilities that was run by students with disabilities. Heumann says that she, Roberts, and other Independent Living advocates fought for community members to be able to use UC Berkeley’s disabled students resources as well. All of this work culminated in the start of the first Independent Living center, the Berkeley Center for Independent Living. And now, in recognition of Ed Roberts’ legacy, we celebrate Ed Roberts Day each year on his birthday, the 23 of January.

The Independent Living Movement has since shifted to fit the evolving needs of the disability community and keep up with advancements in policy, technology, and social attitudes. In a Storytellers video for Rooted in Rights, Alex Ghenis, a disability rights activist and policy specialist from Berkeley, California, spoke about the legacy of UC Berkeley’s Disabled Students Residence Program, the modern day equivalent of Ed Roberts’ work on campus in the 1970s. The university closed the DSRP, and according to Ghenis, has not fully reinstated it, despite ongoing pressure from student activists.

“The DSRP and similar programs are also important in that they can teach personal empowerment around independent living, and instill a strong positive disability identity,” says Ghenis. There are many challenges that people with disabilities face to live independently, including finding and hiring personal care assistants, receiving medical care, and balancing school and/or employment with other daily needs. The DSRP helped bridge that gap, and provided the necessary resources to make the transition to independent living as smooth as possible.

One of the challenges of independent living programs is that they requires a combination of adequate funding and financial support, government services, access, and accommodations. “All of these require resources of some sort, and it takes vigilance to get those resources and keep them long-term,” explains Ghenis, who recommends that activists and coalitions continually strategize how to fight for the resources needed, whether through direct action, political organizing, or public messaging. Innovation, whether it happens in policy or technology, can make it easier to provide necessary resources, and activists need to continue creating progressive ideas that push the movement forward.

Both Heumann and Ghenis feel that we’re in a particularly difficult time for the Independent Living Movement.

Although there have been decades of progress around the expansion of public access, equality, and benefits such as financial assistance, health care, and independent living supports, there is currently significant pushback from small-government and fiscal conservatives to reduce benefits and make them more difficult to manage.

“The Independent Living Movement simply has to push back against the repeal of so much it has fought for in the first place,” Ghenis says, citing examples like the new Electronic Visit Verification (EVV) systems that jeopardize people with disabilities’ independence and privacy, and may eventually lead to a loss of personal care and the need to live in institutions.

“Now it’s not whether we can make advancements, but we’re needing to make advancements at the same time as we’re fighting to make sure advancements we have already made are not taken away from us,” says Heumann, who mentioned health care as a prime example of how the disability rights movement is expending a lot of energy fighting against the repeal of rights that were previously won.

The Independent Living Movement is something we will need to continue to fight for. But it’s important that we do celebrate the collective and individual wins of our community, and honor activists the way we do with Ed Roberts Day. As Heumann remembers him, Ed Roberts was a man who empowered the disability community by showing others that they could accomplish what he did, and that anyone can be an activist. “Ed Roberts Day honors a man who was so central to its progress,” says Ghenis, “and also reminds us of the power of individual activists to continue the fight.”

The Threatened Legacy of Independent Living with Alex Ghenis

Disability History and Culture

About

Alaina Leary

About Rooted In Rights

Click here to pitch a blog post to Rooted in Rights.

Activist Spotlight: Denarii Grace – Singer-Songwriter, Poet, Aspiring Screenwriter

Posted on January 10, 2018April 13, 2023 by Alaina Leary

Denarii Grace believes that an artist should reflect the times, and that’s what she does as a blues singer-songwriter, poet, aspiring screenwriter, and freelance writer.

“We have a responsibility to be truth tellers, speak to our people(s), and create visions for liberation,” she says.

Denarii has been an activist for ten years, starting when she was a queer student leader in undergrad at Rutgers University-New Brunswick. Her first role in activism was as the secretary of a student organization for LGBTQIA2S+ Black and Indigenous people and people of color (BIPOC). She’s dedicated to making sure that BIPOC are represented and safe queer spaces, which is important to her as a self-identified Black woman who is femme; fat; physically, mentally, and learning disabled; poor; and brown-skinned.

Outdoors, day time. Denarii, a proudly fat, brown-skinned Black woman, is wearing a pink flower in her afro, a black tank top with a pink half-sweater over it, and dark denim jeans. She's sitting on a large gray rock, resting her hands on her black cane. She's facing the camera, not smiling. In the background are the green trees and grass of Central Park.

Through her many forms of creation, Denarii practices activism. She has been working on her singing, songwriting, and performance this year, and her goal is to get into a studio by the end of the year. “I’m hoping to make my first music video (or two) next year, once tracks are laid down and finished,” she says. She would also like to book more speaking opportunities at universities and conferences, and wants to move toward financial independence and move out of her mom’s apartment and into her own space.

Right now, she’s working toward her next show, which is scheduled for February 2, 2018 in Manhattan. Her shows usually include original music, poetry, and essays, and she works hard to make sure they’re financially and disability accessible, including hiring an American Sign Language interpreter. “I really love the intimacy of a small show,” she says. “I love really feeling like I’m connecting with people, because that’s why I’m here. I like being able to chat with folks afterwards and learn who my audience is and what they’re bringing into the space. I love seeing folks’ reactions, whether it’s laughter or somberness.” Denarii regularly hosts Facebook Live chats where she intertwines musical performances with answering activism and social justice questions.

Denarii believes that art is one way for marginalized people, especially those who are multiply marginalized as she is, to feel affirmed and seen. We all need to be honest about where our talent and passion lies, she says, and then find a way to carve out space for ourselves in the world.

“Before I came out as bi, before I found fat activism, before I embraced my Blackness, the arts are what helped me survive,” “It’s important that we remain in the arts, creating our own spaces for innovation, intuition, and storytelling, so that a single narrative of what it means to live and love and laugh and have joy and feel pain and feel alone doesn’t continue to be portrayed as the only narrative.”

In addition to her music, Denarii is a board member for Bisexual Resource Center, where she’s involved in several areas, but primarily works as the blog editor. “I saw it as an opportunity to carve out space, as best as I can, for more visibility for Black, Indigenous, and other folks of color,” Denarii says. That’s one of her priorities in her work with BRC because BIPOC are so often underrepresented in bi+ spaces.

The thread that runs through all of Denarii’s work is freedom—freedom to exist as a multiply marginalized person, to create and share art, to educate, and to be seen and heard. “That’s what I hope people get from my work: a vision of freedom,” Denarii says. “I create work that thinks about what that looks like and why that liberation is necessary.”

Activism and Advocacy, LGBTQIA+, Race and Disability

About

Alaina Leary

About Rooted In Rights

Click here to pitch a blog post to Rooted in Rights.

Celebrating the Disability Community’s 2017 Wins

Posted on January 2, 2018April 13, 2023 by Alaina Leary

Disabled people have accomplished some really kickass things in 2017 that we should recognize. It’s not easy existing as a disabled person in an ableist world (and even tougher if you’re multiply marginalized), but I believe in celebrating our successes, particularly because it can be a vital part of self-care. It can be energizing to focus on the work we’ve done and its positive impact on our communities.

There were policy wins this year at both the national and local levels.

One of the most notable, of course, was that protesters, many from the disability community, made national headlines this year fighting to defend health care access. “We saved healthcare,” says Cara Liebowitz, an activist and writer who is involved with DC Metro ADAPT and was arrested protesting the Graham Cassidy bill. “Again, and again, and again.”

Along with the ongoing fight for healthcare access, there were other important policy wins across the country. The Democratic Party announced they would be backing the Disability Integration Act, a piece of legislation that affirms the right to live in our communities. Hearing aids for mild to moderate hearing loss were made available over-the-counter in 2017, after Senators Elizabeth Warren and Chuck Grassley introduced new legislation that was signed into law. “Hearing is a human right and hearing aids shouldn’t be the new status symbol of the rich,” says Janice Lintz, CEO of Hearing Access & Innovations, who offered testimony on behalf of the legislation in front of the FDA. The city of Seattle, Washington lost a legal suit that they said they have enough curb cuts, and the city is now required to build thousands more. ADAPT Chicago pushed Bobby Rush to recognize and support the disability rights movement and withdraw support for HR 620, also known as “ADA Education and Reform Act.”

In Albuquerque, New Mexico, the city’s Inspector General wrote a detailed report outlining many ADA violations and civil rights denials reported by a cross section of disability organizations. In Massachusetts, The Alternative Housing Voucher Program received a funding increase for the first time in years. And in New York, two class action lawsuits were filed against the Metropolitan Transit Authority because over 350 of New York City’s subway stations aren’t accessible, and the goal of the lawsuits is to make the transit system fully usable for people with disabilities.

According to disability attorney Michael Liner, another significant win for disability rights this year was the Social Security Administration finally recognizing nurse practitioners, physicians assistants and audiologists as “acceptable medical sources (AMS),” or AMS, to diagnose medical conditions in their respective fields. With the addition of physicians assistants and nurse practitioners, it’s easier for lower income people to get everything they need for a disability benefits (Supplemental Security Income or Social Security Disability Insurance) application.

Mia Ives-Rublee led the charge along with other disability rights activists to make the Women’s March on Washington more accessible to the disability community, and helped develop the Women’s March on Washington Disability Caucus. Members of the disability community worked with Women’s March organizers to disabled activists, coordinate outreach to the disability community, help with accessibility services, and make the Unity Principles inclusive of disability. “In the end, the estimated count of disabled people attending the Women’s March on Washington was around 42,000,” says Ives-Rublee. “It is believed to be the largest contingent of disabled people to attend a protest march in history. We still have a long way to go, but I truly believe we have made progress.”

The Disability March website was also created by disabled organizers as an online counterpart to the Women’s March, with a goal of making activism accessible. Their website highlights how people can get involved if they’re unable to physical attend an in-person event.

Rebecca Cokley, a Senior Fellow for Disability Policy at the Center for American Progress, believes coalition building is a significant part of sustaining momentum in the disability rights movement. This includes organizational commitment to inclusion. “I am very proud of the establishing of a disability policy think tank at the Center for American Progress (CAP),” she says. “CAP is the first of the progressive think tanks to commit to building its capacity on disability policy and I am hopeful we will not be the only ones.”

While many of this year’s disability rights wins were policy-focused, a lot of successes happened in creation of art by and for disabled people, as well as grassroots organizing. We need to value all kinds of activism when we’re celebrating our collective wins. “It’s important to amplify the work of all people working in disability justice space,” says Lydia X. Z. Brown, writer and organizer.

In partnership with Alice Wong, Vilissa Thompson, and the Disability Visibility Project, Rooted in Rights contributor s.e. smith created the Disabled Writers online database, a resource editors can use to hire journalists in the disability community and journalists can use to connect with disabled sources. Keah Brown started the hashtag #DisabledAndCute in 2017, which quickly went viral and empowered the disability community to share our stories and photos. The Deaf Poets Society, an online magazine dedicated to art and writing by and for disabled and d/Deaf people, celebrated its one year anniversary, as did Rooted in Rights Digital Manager Vilissa Thompson’s #DisabilityTooWhite, which started meaningful change around racism in the disability community. #BoycottToSiri started conversations about ableism in book publishing and the importances of centering autistic people’s voices and experiences.

Activism can be exhausting work, whether you’re creating poetry or journalism, doing academic research, or working on political organizing. As we move into 2018, it’s critical that disabled activists remember to celebrate small victories and practice self-care. “I think we all need to remember that living our lives with joy is a form of resistance that is not fully credited for its power,” says Ives-Rublee. “I always recommend that people make sure they take at least an hour each day to do something they love.”

Community Living, Disability History and Culture, Health, Policy, Race and Disability

About

Alaina Leary

About Rooted In Rights

Click here to pitch a blog post to Rooted in Rights.