Alaina Leary

#BoycottToSiri Highlights Why Non-Autistic People Must Stop Speaking Over the Autistic Community

Posted on December 18, 2017April 13, 2023 by Alaina Leary

The experience of being an autistic person isn’t universal, but there is one thing that we’ve all experienced—non-autistic (or “allistic”) people speaking over us.

A recent example of this is To Siri With Love, a memoir by Judith Newman about her experience as a neurotypical woman raising her 13-year-old autistic son Gus. Backlash swifty emerged on social media as autistic readers began raising issues with the book on social media, discussing its problematic themes, including forced sterilization and over-sharing of intimate details of Gus’s life. Autistic YouTuber Amythest Schaber launched the hashtag #BoycottToSiri.

This overwhelming response to the memoir from autistic people highlights the ongoing tension between the #ActuallyAutistic community and parents, loved ones, and experts who constantly position themselves as the only authority on autism. Newman’s work is a prime example of an allistic parent speaking for and over their autistic child, and since the controversy, the author has only doubled down in defense of the work.

This same issue of allistic parents talking for and over autistic children was raised with #CrippingTheMighty in 2015, and continues to be an issue between the autistic community and parents of autistic kids. “There are many, many autistics that are very capable of speaking for ourselves,” says Marie Porter, an autistic costumist, competitive cake artist, and author, “even non-verbal autistics, who are denied their voice even more than the rest of us.”

“They [allistic people] frame everything to do with us in the context of how it affects them, dominating autistic spaces and discussions with neurotypical perspectives and constantly pushing down our voices in order to further elevate theirs,” says Ryan, a 17-year-old autistic high schooler from Canada.

It’s important to note that there’s nothing inherently wrong with parents sharing their experiences raising their children, including their autistic children. As organizer and writer Lydia X. Z. Brown says, it’s all in the details of how they write it. If they’re writing from their own perspective in advocating for their child’s needs and not making assumptions about how their child feels, that’s one thing. What’s harmful, Lydia explains, is “writing about an experience that actually isn’t theirs, but putting it out there as if it is. It deliberately erases the autistic child’s experience, and presumes that they can’t have a voice of their own.”

“I think this is a fundamental issue that autistic people face in a microcosm: even some of the people who are ostensibly on our side and love us the most aren’t willing or able to challenge their own beliefs on the subject to actually see us,” says Sarah Kurchak, a freelance writer based in Toronto, Canada.

“If people in positions of power only read about autism from non-autistic perspectives, they will set policies that are damaging to autistic people,” says Brown.

The fact that media is dominated by these tropes is a real problem for actual autistic people. There’s not a lot of media that represents us; to this day, I haven’t connected with a piece of media with a canonically autistic character who I felt accurately reflected my experience. Most of what exists is filled with stereotypes and the same harmful themes that the autistic community has pointed out in To Siri With Love, like autistic people not being empathetic or creative, or positioning us as a burden to allistic and non-disabled family and friends.

This also doesn’t leave much room for autistic-created media. “Unless and until there are as many agented seats open for autistic writers as there are for agented allistic writers, these kinds of stories need to stop,” says Kaelan Rhywiol, an author and editor. “Many of us, autistic writers, we’re living well under the poverty line. So this is, for many of us, a matter of life and death.”

Allistic people who have autistic loved ones need to commit to doing better if they want to tell stories involving us. Because there are already so many harmful stereotypes and myths about the autistic experience, they need to actively work to unlearn ableism, practice radical empathy toward us, and understand us to meet us where we are.

Autism and Neurodiversity

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Alaina Leary

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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

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Why We Need More Research on How Substance Abuse Impacts the Autistic Community

Posted on November 27, 2017April 13, 2023 by Alaina Leary

I will always remember the first few times I tried an alcoholic beverage. I was around the age of eighteen, and at first found the feeling very uncomfortable. Even a slight buzz—just a partial alcoholic beverage—changes my perception and how I experience my senses. But what I found at first to be really disconcerting (like the fact that I generally say whatever is on my mind when I’ve had a drink, which is an autistic feature that I learned to “turn off” a long time ago to adapt to social settings) started to feel freeing.

A new study in Sweden suggests that autistic people are more than twice as likely to become addicted to substances like drugs and alcohol than our peers are. (The study makes this distinction for autistic people with “average or above average IQs,” but I don’t personally find IQ or functioning labels useful when discussing autistic communities.) The risk is even higher for people who also have ADHD, like I do. This is the first study of its kind, and autistic people were previously pretty much ignored in research about substance abuse.

“I began smoking and drinking alcohol when I was in my early teens,” says Laura James, an autistic author and journalist from Norfolk, England. “Although my autism wasn’t diagnosed until relatively recently, at the time, I remember noticing that both made me feel less stressed and socially awkward. Post-diagnosis it became immediately apparent I had been self-medicating.”

While I don’t identify as an alcoholic, I have absolutely used alcohol to cope with some of my autistic features.

Drinking does amplify some of my features; I have even more trouble with face blindness, proprioception, directions, and stopping or starting tasks. But it also eases most problems with sensory awareness: Loud noises, bright lights, and uncomfortable surfaces all bother me significantly less when I’m under the influence. I almost always have a drink or two when I’m going out to a bar, because all the things I dislike about bars—how hard it is to talk and hear, the sticky floor from spilled booze, people bumping into me—fades away if I have a drink or two.

Emm, a software engineer, painter, and writer from the New York City area, also finds that substance use can ease social difficulties that are common for autistic folks. They say, “Using substances, specifically marijuana, provided me with the illusion that I ‘fit in’ with social situations. All of my friends smoked marijuana, and when we smoked to together, it seemed to bring us to the same level.”

I don’t have as many challenges with social situations as some of my autistic peers. Despite being face blind, I’m really adept with body language, tone of voice, and facial expressions, so I can tell when someone isn’t into a long conversation about my special interests or when they’re just dying to tell me about their day. But still, like most autistic people, I feel socially different; I hate small talk and tend to be emotionally vulnerable sooner than people expect.

Alcohol helps those differences fade. It’s much easier to excuse the things that usually make me noticeable in a group of neurotypical people, like my tendency to enjoy controversial discussions or how excited I can get about something small, when it can be passed off as “Alaina’s tipsy.” When I don’t know where I’m going or I fall on my face just walking to the bathroom, we can all laugh about it, because suddenly I’m not the only person with a balance deficit.

Alcohol and drugs may seem like a quick fix to self-medicate, but problems with addiction and substance abuse are serious problems that can be difficult to treat. Addiction runs in my family, so I’m always careful about how and when I use alcohol. I don’t want it to become a coping mechanism for sensory overload or autistic burnout.

It’s clear that we not only need more research about how substance abuse affects autistic people, but also treatment specifically designed for our community. Our treatment needs to be focused on our needs, not on forcing us to present as neurotypical and non-autistic, and should be adaptive to individual differences.

Autism and Neurodiversity

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Alaina Leary

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Activist Spotlight: Ariel Henley – Writer

Posted on November 17, 2017April 13, 2023 by Alaina Leary

Ariel Henley has always loved writing, but didn’t always know that she would use it to amplify issues that she cares about, whether the topic is sex education for the disability community or media representation of facial disfigurement.

Born with Crouzon syndrome, Ariel’s work often comes back to what it means to live with a facial difference in an ableist society that places so much emphasis on physical beauty. “The more pieces I had published, the more I heard from others like me, who had never had the opportunity to have their stories and their struggles highlighted in the media,” she says. “Now I know this is what I was meant to do.”

Ariel is currently pursuing her master’s degree in higher education and student affairs, and hopes to work at a college in admissions or as an academic advisor to help bring more diverse students into higher ed. She’s also working on her memoir.

Anyone who reads Ariel’s work leaves with a greater understanding of what life is like for people with facial differences, and it’s impossible not to feel a strong sense of empathy because her writing is authentic and powerful. (Her essay “White Noise,” published on The Rumpus, was a notable for 2016 Best American Essays.) She hopes that readers who are outside the facial difference community become more open to listening, and the importance of learning.

As an essay writer and memoirist, being vulnerable and honest is central to Ariel’s work. “I believe in the power of authenticity, so being able to really reveal my deepest truths is really empowering to me,” she says. “Sharing my stories is how I connect with the world and the people around me.”

Visibility also comes with that level of vulnerability, though, and as a public figure who writes openly about her experiences, Ariel is no stranger to online trolling and harassment. She regularly receives hate mail and vicious online comments, often attacking her appearance.

Her advice for other writers, activists, and public figures, particularly those who are marginalized? Don’t read the comment sections. Ignore the hate, and “Always speak your truth.”

As a freelance writer, Ariel has at times been boxed in by her facial difference. Editors and clients sometimes see her as “a writer with Crouzon syndrome,” rather than just a writer. She has also worked with ignorant and naive editors in the past who changed the integrity of her work to make it more sensationalist, but she’s learned to be more upfront with her editors. “If someone says something hurtful, I tell them. I almost always ask to see the final version of a piece before it runs,” she says.

Although she’s been pitching more to editors outside the disability lens, she’s also accepted that even if people see her as a writer with a facial difference first, what matters is that she’s able to reach readers. One disability activist wrote to her to say that Ariel’s work on facial equality had saved her life.

“There are no words to describe how it feels to know my words have helped someone,” Ariel says.

For Ariel, recognition has been an incredible feeling as an activist, not just because she’s proud of her work, but also because she knows it will make an impact. “Disfigurement has sort of been a separate category for a long time — one that’s received minimal attention, in my opinion,” she says. That’s something that Ariel is determined to continue working to change.

Activism and Advocacy

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Alaina Leary

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Activist Spotlight: Cyree Jarelle Johnson – Writer, Speaker, Artist

Posted on October 30, 2017April 13, 2023 by Alaina Leary

When I first asked Cyree Jarelle Johnson what their activism is focused on, they said, “I don’t know what it means to be an activist. I’m a writer and a speaker. I think of myself as an artist.”

Then they talked about how what we typically think of as activism—getting our physical bodies onto the streets in protests—is so largely inaccessible to the disability community.

I disagree with Cyree; I think they’re an activist and an artist, and that it’s possible (and maybe even preferable) to be both. Art can be political and make a statement, and activism isn’t only for people who are able to participate in something akin to the Capitol Crawl or marching in Washington, D.C. for Medicaid.

Art in itself is a form of activism, particularly when it’s created by marginalized people who are often ignored by traditional forms of protest.

Cyree’s work—which comes from their experience as a non-binary black person with an autism spectrum disorder—is a protest to anyone who believes that marginalized people don’t belong in the mainstream. They are a poetry editor for The Deaf Poets Society, managing editor at Transfaith, a member of the Harriet Tubman Collective, and a candidate for an MFA in poetry at Columbia University. Their work also raises awareness of Systemic Lupus Erythematosis, a condition that they have. “I don’t think people are talking about lupus correctly yet,” says Cyree, who hopes that more people will become invested if they know more about lupus.

What Cyree loves about writing is the freedom that the form offers. “Writing helps me say exactly what I mean, and then I can edit myself,” they say. “That’s how I fell into practice as a writer.”

Right now, Cyree is working on three different narrative poetry manuscripts, and is trying to figure out how to talk about disability authentically in these stories. They don’t want to center their characters’ narratives around disabilities, because it’s not accurate to the disabled experience and our lives don’t always revolve around our disabilities.

Cyree had the opportunity to speak at the White House for the 2016 Forum on LGBTQ and Disability Issues, nicknamed LGBTQ Disability Day about systemic issues with healthcare and how disabled people of color are at a higher risk of violence. Although they may not identify as an activist, the work of activists deeply impacts Cyree. “More than anything, I think that Harriet Tubman’s is the work I feel most closely aligned with. It’s hard for Black people to admit that they’re disabled.”

As a whole, Cyree’s work is about storytelling—particularly the stories of people whose stories aren’t often told, and telling the stories about disabled people that we don’t often hear, like those at the intersections of black or trans identities and disability.

And their work is activism because it fights back against the idea that we need to be able to fully physically participate in non-disabled people’s idea of protest in order to create positive change, and because it challenges any form of activism that isn’t fully accessible for everyone to participate in. It’s a form of activism that the disability community will always need more of.

Activism and Advocacy, Disability History and Culture, LGBTQIA+, Race and Disability

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Alaina Leary

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Why Finding Cures for Genetic Disabilities Shouldn’t Be Our Main Goal

Posted on October 16, 2017April 13, 2023 by Alaina Leary

Iceland was recently the subject of controversial headlines proclaiming that the country is “eliminating” Down syndrome through prenatal screening and subsequent termination of pregnancies. While these news stories were later found to be sensationalist, we need to discuss the implications of prenatal screenings and other advancements in genetics in connection to people who are living with disabilities. Many were critical of these stories, concerned they were promoting eugenics by suggesting that prenatal screenings could wipe out an entire population with Down syndrome in the future, and concerned about the effects that the language of such stories have on people with genetic disabilities.

Celebrating scientific advancements centered around the idea of a cure for or elimination of disability can be problematic, because it hinges on the idea that we should want to eliminate disability.

Recently, there was significant pushback from the disability community when SXSW held a panel titled “End of Disability? Neurotech’s Future Frontier.” Disability activists spoke out against this concept, sharing what it’s like to be a part of the disability community, to have disability pride, and how cure-focused language can be harmful to living people with disabilities.

“My life has worth, it has meaning, but that is questioned every time things like this come up,” says Sheryl Grossman, who has Bloom’s Syndrome.

Many disability advocates feel that advancements in science and technology should be centered on improving the lives of disabled people, rather than completely trying to get rid of our community through cures or screening for genetic conditions. “Phrasing it to someone as ‘Wow, I saw something that can improve your quality of life’ is perceived a lot better than saying, ‘Wow, I found something that can cure you,’” says Katy Brennan, who has Ehlers-Danlos Syndrome.

I also have Ehlers-Danlos Syndrome, which is often inherited, and autism, which hasn’t been proven to be genetic but is frequently at the center of cure conversations. While there are challenges involved in both of my disabilities, I’m not looking for a cure for either of them. Instead, I’d like to see advancements in pain management treatments for chronic pain and improvements in mobility aid technologies. And as an autistic person, I’m most excited about potential future advancements to technology like self-driving cars, since driving is one of the biggest barriers I experience. I’d much rather people who are putting their energy behind cures or disability elimination redirect that energy to tackling ableism and making the world more accessible.

“Those who are fighting so hard to ‘eliminate’ genetic disability should be fighting infinitely harder to change the world,” says Emily Ladau, Editor in Chief of Rooted in Rights, who has Larsen syndrome.

Emily worries about the possibility of passing her genetic disability on to a child, who would be born into a world that clearly doesn’t value disabled people. That said, I inherited my Ehlers-Danlos syndrome from my mother, and despite the challenges we faced living in a world not designed for the disability community, I was lucky to grow up with a disabled mother as a role model. It was my earliest introduction to accessibility and accommodations, as well as daily living for disabled adults.

“Growing up with a dad who had my mobility impairment and a mom who had a hearing impairment was a critical part of feeling a sense of disability pride,” agrees Jill Crawford Hurt, who has Charcot-Marie-Tooth. “At a young age, my parents were the role models I needed in order to learn how to face ableism. The perk of cross-generational mentorship is often missing for kids with disabilities. I was fortunate to have that. I’m proud to be able to offer that to my kids.” Having disabled role models offers people, especially kids who are growing up in an ableist world, a different perspective on disability community and pride.

As a disabled person, I want to live in a world that allows me to live—and radically love myself—as I am, autism and cane and all, instead of a world that seems to want to get rid of people like me at every turn.

I want people to fight harder for accessibility and work on recognizing ableism in themselves and in society around them. It’s time to move away from conversations about cures, and to have conversations that truly matter about how we can move toward a less ableist society.

Family, Health

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Alaina Leary

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Activist Spotlight: Annie Segarra – YouTuber, Artist, Activist

Posted on August 30, 2017April 13, 2023 by Alaina Leary

For Annie Segarra, also known on YouTube as Annie Elainey, accessibility is everything. Annie’s “The Future Is Accessible” shirts, which come in several colors, act as a call for visibility and intersectionality, and to prioritize accessibility.

The shirts are only one aspect of Annie’s overall body of work as a writer, artist, YouTube creator, and activist. She originally became involved in activism as a teenager, but at the time was more focused on LGBTQ+ and women’s issues. Later, she found body politics and the disability community. In college, Annie began to share her creative work, and started filming YouTube videos in which she opens up about her experiences and opinions.

“It’s all about truthful and effective communication and expression for me,” Annie says. “It’s about giving people the tools to engage, bouncing off ideas, giving each other the language to communicate ourselves to those around us better, strengthening community through saying the scary honest thing, and finding others who understand.”

In her videos, as well as on her various social media platforms, Annie tends to be raw and vulnerable. For instance, she shared her journey to her Ehlers-Danlos syndrome (EDS) diagnosis with her followers, many of whom are also dealing with undiagnosed health issues. Like many disabled activists, Annie’s health impacts her work deeply. She’s currently working on finding a management plan for her EDS. “I’m currently just very ill all the time and in a lot of pain,” she says. “I’d love to find a treatment that stabilizes my health a bit, as well as tools and accessibility so I could give more of my time and energy to my work.”

As a queer disabled woman of color, Annie prioritizes intersectionality in all of her activism work “I’d love to go to more queer spaces and events but a lot of them are not accessible to disabled people,” she says, highlighting an example of how important it is for activism to be done through an intersectional lens. When you’re multiply marginalized, not only do you feel isolated and excluded by privileged groups, but you also often feel left out in your own communities, which may not recognize the multiplicity of your experiences and may be filled with racism, homo- and trans-antagonism, ableism, anti-Semitism, classism, or other forms of systemic oppression.

Annie doesn’t just want to give a voice to the multiply marginalized people within the disability community—she also wants her nondisabled followers to have more empathy for what our community goes through and challenge their own ableism.

“I want those outside my communities to listen and gain some perspective, to unlearn some biases, to become more aware and considerate,” she says. “This goes for within my communities as well, as none of them are a monolith, there are so many diverse perspectives with their own validity and I hope they’ll be heard.”

Through her platform, Annie reminds others that they have a voice and a story that matters.

“Queer disabled women of color are rarely seen, rarely known, and I want to be out there, sharing, being visible,” says Annie. “For all of us, I want to uplift our narratives.”

Activism and Advocacy, LGBTQIA+

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Alaina Leary

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Accessing the Open Road

Posted on August 22, 2017April 13, 2023 by Alaina Leary

I didn’t get my driver’s license until I was almost twenty-one, and until I did, I couldn’t go more than a couple months without someone asking me about it. “When are you going to learn how to drive?” “Have you thought about driving?”

Learning to drive—and mastering the rules of the road—was difficult for me as someone with sensory processing disorder. I had trouble figuring out how close my car was to other cars and whether they were parked or in motion, and I waited way too long to turn, certain that I was going to get hit by oncoming traffic.

Driving shouldn’t be seen as a one-size-fits-all indicator of adulthood and independence, especially when there are still so many barriers to disabled people learning how to drive. There are plenty of disabled and nondisabled people who can’t drive or don’t want to, but there are also many of us who want to get our licenses but can’t.

Alex Haagaard, a disabled writer and activist near Toronto, Canada, has been advised by doctors not to get their license because they have narcolepsy. Alex works one day a week teaching, and the drive is a five or six hour commute, round trip, from their home. “As someone dealing with chronic pain and fatigue, this is exhausting,” they said. “I could not manage this more than one or two days per week at most.”

Self-driving cars are just one example of how technology can help bridge this gap. We’re also making headway with vehicles that can self-park. A friend of mine who has sensory processing issues has a backup camera in his car so he knows how much room he has behind the car; I use a GPS app on my phone because my sensory processing disorder means I’m terrible with directions. The problem, of course, is the prohibitive cost of many technological advances like self-driving vehicles. Even my iPhone costs me around $80 a month. It’s important to increase access—self-driving cars and other technology should be designed with cost effectiveness and disabled people at the forefront.

Grace Lapointe, a writer who works in Boston, quit her high school driver education class when she realized it didn’t suit her needs as someone with cerebral palsy. After college, she tried to set up an adaptive driving evaluation through the Massachusetts Rehabilitation Commission, but was told she’d have to travel to Connecticut because there was a lack of resources and demand in Massachusetts.

“It would be easy if you had these services locally and could come back for multiple adaptive lessons as they suggested,” says Grace, who opted not to participate in lessons. “It would be virtually impossible to keep coming from out of state.” Grace says that affordable vehicle adaptations, appropriate instruction, and an accessible evaluation would help her learn how to drive, so she wouldn’t need to rely on friends, family, and paratransit.

It’s important that programs designed to help give disabled people access to driving actually be accessible; that they’re easy enough to get to, and affordable to a wide range of people.

If we’re looking toward technological advances as a solution for disabled people who want to drive, we need programs similar to SafeLink Wireless that will provide access to this technology (like self-driving or adaptive vehicles) to financially disadvantaged disabled people free or at a lower cost, for everything from smaller adaptive features to an entirely self-driving vehicle.

Disabled people don’t always drive—and for those who don’t, accessible and useful public transportation is critical—but we should be given equal access to the opportunity.

Transportation

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Activist Spotlight: Keah Brown, Writer and Creator of #DisabledAndCute

Posted on July 31, 2017April 13, 2023 by Alaina Leary

When she started the hashtag #DisabledAndCute, Keah Brown wasn’t thinking she’d start a movement. She woke up one day, and as she says, “I looked in the mirror and said something kind about myself.” She decided that she’d make a conscious effort to say something kind about herself every day, and when she finally got to a point where she began to believe it, she started the hashtag.

The hashtag, which was quickly embraced by the disability community and covered in a number of major media outlets, was a part of Keah’s larger activism efforts: “To shine a light on what it’s like to be a disabled woman of color.” Her work mainly focuses on portrayals of disability and people of color—and the intersections between those experiences—in the media. Keah has published in Harper’s Bazaar, Teen Vogue, Lenny Letter, ESPNW and more.

“So often, disability is represented as so white. Even in indie films, you don’t see disabled people of color,” says Keah. “We shouldn’t be silenced in the way that we have been. My goal is to make mainstream media less white and able-bodied.”

According to Keah, the response to her work has been mainly positive. She recently met writer Roxane Gay at a University of Buffalo event, and Gay knew who she was. “Knowing that she’s read my work is so cool,” Keah says. “I think it’s a blessing for us to be able to read her work while she’s here.” Many black women writers don’t become well recognized, or even have their work published, until after their deaths, which is an aspect of publishing that Keah is working to change.

Keah focuses on intersectional representation in the media because we’re all influenced by what we see, or don’t see, in movies, on television, and in books. “I think we deserve to be seen,” Keah says. “When I was growing up, I didn’t see any black disabled people.” Keah does see parts of herself in the characters Garrett from Superstore and JJ from Speechless, but her work is about continually elevating media representations so that disabled characters and characters of color have a variety of characters to connect to. She says, “It’s only fair that we critique that we aren’t given the representation that we deserve.”

Although much of her work focuses on disability and her identity as a black woman, Keah’s wary of being pigeon holed or boxed into a role where she’s not allowed to write about anything else. She writes book reviews, pop culture and entertainment news, fiction, and poetry that isn’t connected to her marginalized identities.

In Keah’s future, she hopes to continue to do this work in bigger ways. “I kind of want to do everything,” Keah says, admitting that she didn’t always want people to know about her ambitions because society is quick to tell disabled women of color what they can’t do.

Currently, she’s working on trying to become a guest on The Ellen DeGeneres Show. Keah fell in love with Ellen’s show when she was dealing with suicidal thoughts. “Before I became #DisabledAndCute, I would have an hour each day when I would feel joy, and it was because I was watching her show,” she says. “I just want to thank her. I didn’t want to live, and every time I watched her show, she was bringing people joy and making me laugh.” Keah also wants to write in different genres, write for a TV show, write a movie, and write a few books—and she recently became represented by literary agent Alex Slater at Trident Media Group.

“What I hope people take from my work is that disabled people of color live lives and our stories deserve to be told,” Keah says. “We don’t have enough at the end of the day. I want to be seen. A lot of my work started because I wasn’t seeing myself.”

Activism and Advocacy, Disability History and Culture, Race and Disability

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Finding Suitable Employment with a Disability

Posted on July 18, 2017April 13, 2023 by Alaina Leary

Finding employment as a disabled person can be challenging. From asset caps to maintain benefits, to exclusionary language on job applications, barriers abound. There are a number of national and local resources available to people with disabilities who are looking for employment, but they don’t cover everyone. According to the United States Department of Labor, only 60.1% of men and 51.4% of women with disabilities are employed, and many disabled people are paid subminimum wages for their employment. We need to raise these numbers. Every disabled person who wants to work should be able to find suitable employment that pays a fair market wage.

Disabled people often face assumptions during the interview process that we aren’t as capable as non-disabled people, and that’s if we can even get to that stage.

Many job applications use language that overtly excludes people with disabilities, such as requiring walking, standing, lifting, verbal communication, or the ability to hear or see as a required part of the job. “I have seen some applications with tricky questions, such as ‘Will you need accommodations or assistive technology to perform these job tasks?’ and sometimes people won’t apply if the answer is yes,” says Sharon Rosenblatt, an accessibility technology specialist and disability rights advocate in New Haven, CT. “It’s illegal to ask outright if an applicant has a disability, but those questions do seem discouraging, even if only meant innocuously.”

Elizabeth Roderick, an author, editor, and neurodiversity activist in Washington State, also points out the issue that employment programs for the disabled aren’t always designed to be accessible to differing needs. “You have to be able to act like a non-disabled person: get up on time every day; show up when and where you’re supposed to, with reliable transportation; communicate in a socially-acceptable manner; pay attention, follow instructions, and remember what you’ve learned; and maintain focus and energy throughout a regular workday,” she says, all of which can be barriers for many disabled people.

When Erin Hawley, a writer and digital content producer in Keyport, NJ, first started looking for work after college, she used the Department of Disability, which found her a data entry job at the local county clerk’s office. But the work was not equivalent with her skill set or educational experience, which is all too common for disabled applicants using vocational services. While vocational rehabilitation and other programs designed to help disabled people find work are useful, they don’t work for everyone.

Elizabeth Roderick, an author, editor, and neurodiversity activist in Washington State, says, “If we do find jobs, we’re often paid subminimum wage through various employment programs for the disabled.”

Meg Watson, a technician working in Wisconsin, had better luck in finding a job through a disability employment resource. She attended a college that participated in the Workforce Recruitment Program, a federal program that helps qualified disabled students and recent graduates find work opportunities within the government and private sector businesses. Watson believes the opportunity she had should be available to all people with disabilities – not just young, college educated disabled people. “We need to keep people in the workforce once they have found jobs and make sure their jobs are meeting their needs,” she says.

Aside from earning a living wage and sustaining employment, access to health care and supplemental security income (SSI) or social security disability (SSDI) is also a major roadblock for many disabled people seeking employment, since earning income over a certain amount can leave people cut off from these necessary supports. Hawley uses the NJ WorkAbility program so that she can work while maintaining Medicaid.

“If I ever take a promotion,” Hawley says, “I have to worry about losing my medical care. My insurance through work doesn’t cover my in-home nurses.”

The existing systems aimed at helping connect disabled people with employment are useful, but need to be continually improved so that disabled people are being paid fair wages for labor that matches our skills and abilities. We also need sustained access to health care and workplace accommodations while we’re employed. Hiring disabled people isn’t simply checking off a box for workplace inclusion. We deserve the same access to employment resources and opportunities as all other jobseekers.

“Bottom Dollars,” a Rooted in Rights original documentary that exposes the exploitation of people with disabilities who are paid sub-minimum wage, is now available to rent or purchase.

Employment, Health

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Alaina Leary

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Navigating Mobility Aid Misconceptions

Posted on June 29, 2017April 13, 2023 by Alaina Leary

When I first started using a cane, I was faced immediately with misconceptions about mobility aids. I knew from being out in public with friends who use wheelchairs that strangers aren’t shy about asking what someone’s disability is. I was surprised to find that, because I’m in my early twenties, people often assumed I was temporarily injured because of the cane. A store employee asked me if I broke my toe (even though I had no cast on), and someone at my graduate school asked me if I injured myself. Each time it happened, I’d briefly mumble something like “I have a disability” and quickly move on, not wanting to get into details about Ehlers-Danlos Syndrome with someone I’ve never met.

Before I got my cane, I’d already known people who could walk but also used wheelchairs, and whose mobility aids changed depending on the situation. But I’d still held a common belief and applied it to myself—that mobility aids are a “last resort.” I spent years navigating large city crowds and public transportation with difficulty because I was too afraid to use a cane. After one too many falls on public transportation, and days when I was trying to shuffle through big crowds in Boston while passersby shoved me out of the way and I’d lose my balance, I came to the decision that a cane was something I needed.

Using a mobility aid didn’t make me any different; all it meant was that I was using an aid that made it easier to get around. I didn’t have to have certain types of disabilities — a paralyzed leg, a missing limb, a broken toe — to benefit from one. Mobility aids are for whoever benefits from their use, whenever they benefit from it.

Most people seek health care in conjunction with their choice to use a mobility aid, whether it’s physical therapy to learn proper use of forearm crutches, or occupational therapy to help them develop wheelchair skills. Mobility aid use can fluctuate from day to day, or over the course of someone’s life, depending on their specific health conditions. There are occasions when I don’t use a cane, particularly around my own house and when I’m taking short walks out in open areas where there aren’t lots of people. After a long day, my cane can sometimes become a pain, especially if I need to use my arms to carry something—so I’ve got a cane that folds, and I can tuck it into my bag whenever I need to.

Disabled people are often judged if we’re seen with our mobility aids one day and without them the next, or if our bodies act in a way people don’t expect, like when someone sitting in a wheelchair stands up to readjust and someone else shouts, “It’s a miracle!” It’s not a miracle; many wheelchair users can walk. Some people use wheelchairs part-time or on an as needed basis, while others might only need a wheelchair when their symptoms are flaring up or if they’ll be out for an extended period of time.

I feel safest when the people in my life respect my needs and defer to me to make choices about what mobility aids work best in a given situation. There might be also be occasional reasons for someone we don’t know to ask about our mobility, like when I participated in my graduate school’s commencement ceremony and needed to discuss accessibility with the commencement director. The best thing to do is to ask when appropriate and not make assumptions.

Disabled people must be allowed to maintain our autonomy when it comes our mobility aids. We get to make decisions for ourselves about our limitations and comfort, and we get to choose what to use and when.

Health

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Alaina Leary

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New Lawsuit Tackles the Notorious Inaccessibility of the NYC Subway System

Posted on May 16, 2017April 13, 2023 by Alaina Leary

New York City’s (NYC’s) public transportation system is notoriously inaccessible. Only about one in every five subway stations is wheelchair accessible, compared to about 90% of the subway system in Boston, where I currently live.

Two class action lawsuits were recently filed against the Metropolitan Transportation Authority (MTA). The lawsuits accuse the MTA of discriminating against people with disabilities. According to Jelena Kolic, a staff attorney at Disability Rights Advocates, the nonprofit legal center that filed the suits,

“The overarching problem is that the system isn’t meaningfully usable for people with disabilities.”

Over 350 of NYC’s subway stations aren’t accessible to people who can’t access stairs, including those who use mobility aids, or who have difficulty breathing.

Kristen Parisi, a wheelchair user who works in public relations, lived in several major cities before relocating to NYC, including Boston, Washington, D.C., and San Diego. She feels that New York is by far the worst when it comes to accessibility.

“I can’t tell you how many times I’ve had to work from home or miss work completely because the subway or MTA elevators were down,” she says. “Last week I got all the way to the train station and the elevator was down.”

Lynn Zelvin, a blind and hearing-impaired freelance computer trainer, also says that the MTA system lacks proper access for hearing and visual impairments. She explains, “They only recently put any accessible signage outside the subway entrances. Inside the stations, there is sometimes braille signage on one pole, but to be equivalent to what sighted people get, it really needs to be on every pole.”

Disability Rights Advocates hopes the outcome of the lawsuits will result in serious change on the MTA’s part to eliminate these types of access issues. “The ultimate goal is to have a serious, comprehensive remediation plan to make sure that the system becomes fully usable for people with disabilities,” says Kolic.

Boston’s Massachusetts Bay Transit Authority (MBTA) system faced a similar lawsuit by local disability advocates, which settled in 2006, and resulted in significant change to our public transportation system. Our subway is the oldest in the country, and yet it’s more accessible to disabled people than NYC’s. As a mobility aid user who has limited access to stairs, I’ve only run into occasional problems in Boston, such as elevators running slowly or people with strollers cutting to the front of the line to use them.

Kristen Parisi hopes the MTA lawsuit will force New York to do what Boston has been able to do. “Boston has done an incredible job of not only making their subway stations more wheelchair accessible, but the elevators also don’t break down as frequently,” she says. “I hope that NYC looks at this and is embarrassed.”

Although I’ve considered moving to NYC to further my career in the publishing industry, my concerns about accessibility have made me hesitant. I never want to be stuck in a subway station at a broken elevator, unable to get to where I need to go. If this lawsuit enacts any meaningful change on the city’s subway system, I’d be open to changing my mind. And most importantly, it would make New York that much more inclusive and inviting to an even wider range of people.

Disability History and Culture, Transportation

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Alaina Leary

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How Having a Disabled Mom Helped Shape My Identity as a Disabled Woman

Posted on May 4, 2017April 13, 2023 by Alaina Leary

I grew up with a disabled mom. It meant that we didn’t have a car, because my mom was visually impaired and couldn’t drive. We walked to the grocery store weekly, took the bus to doctor’s appointments and the mall, and occasionally took the train into Boston.

I didn’t think much about my mom’s disabilities until physicians started to suspect that I was disabled, too. I failed balance beam day at school—I couldn’t walk in a straight line, one foot in front of the other, on a raised wooden beam a few inches above the floor—and my doctors noticed I had low muscle tone, poor coordination, and difficulty balancing and walking up and down stairs.

Almost immediately, my mom became my biggest advocate, fighting for me and teaching me to fight for myself. Having a disabled mom not only taught me how to advocate, but also helped me build a sense of identity from a young age.

She was one of the only disabled people I knew as a kid – my first exposure to what my life might look like as a disabled adult. Even though my mom and I rarely talked explicitly about what it meant to be disabled when I was growing up, there were moments that I felt it. I inherited my severe Raynaud’s syndrome from her, and in the winter, we’d bundle up head-to-toe in snow gear, go outside for a few minutes at a time, and then rush back inside to warm our hands. Since I was younger, I could usually last through a few more rounds of snowman building than she could, and she’d be waiting when I came back inside, with a cup of hot chocolate and her warm stomach for me to put my purple, swollen fingers on.

My mom showed me, early on, that she was a great role model and a strong, independent person even though she navigated the world differently than able-bodied people, and had different access needs. She was one of the people who never tried to cure me or fix me. She was happy with me as I am.

She didn’t push me to ride a bicycle when I was the age that everyone in the neighborhood could ride circles around me. And because I’m also autistic as well as physically disabled, my mom pushed against physicians who recommended behavioral therapy to stop me from stimming while I was telling her about my day at school. Unlike others, she never asked me to “sit on my hands and feet” to keep them from moving as I spoke. She pushed for schools and doctors to accommodate me, not the other way around.

And she always told me that I should be proud of who I am.

After my mom passed away I missed having that sense of understanding, and a disabled role model. It wasn’t until college that I found another disabled role model in one of my professors, who has chronic fatigue syndrome. She was one of the only other adults who got it—the fact that I needed to think about things like accommodations, accessibility, and flexibility in my college years and beyond. She started conversations with me about what my post-grad life might look like, walking me through options and letting me say whether or not I thought I could handle something.

It’s important to disabled people to have this sense of support and community, to have others around having discussions around accessibility, ableism, and accommodations.

I was fortunate that I made a group of disabled friends in college. Even though our disabilities were varied, we could talk about our experiences without feeling silenced, and every time we made plans, accessibility was a key discussion. Being around other disabled people also made me think, for the first time, that my disability was an identity to claim and be proud of, instead of an impairment that I should hide. It brought me back to those winter evenings warming my hand on my mom’s stomach, because like my mom, my friends saw me for who I am and didn’t ask me to change.

Activism and Advocacy, Family

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Alaina Leary

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