Get Your Flu Shot. You Could Save the Life of a Disabled Person.

Image of a calendar with the words "get flu shot" written down in the box for the 20th. There is a red push pin on top of it.

“Oh, I never get the flu shot. It makes me sick,” a woman tells me at a dinner party, with the sort of shattering confidence that only ignorance can provide.

I am, for a moment, taken aback — and living in Northern California, where ill-informed comments about vaccines are very much the norm, I should be used to it by now. With flu season rapidly approaching, I’m among those lining up for my flu vaccine, but all around me, I hear people saying they don’t plan to vaccinate because “I just get sick anyway” or “I heard it doesn’t work” or “I’m not supposed to get to get it.”

When I asked Dr. Anthony Fauci, the Director of the National Institutes of Allergy and Infectious Disease (NIAID), whether the flu vaccine makes patients ill, he was swift to respond.

“No, it doesn’t,” he said.

Fauci oversees $5.3 billion in U.S. funds dedicated to researching a broad spectrum of topics related to allergies and infectious disease. He’s served under five presidents and made incredible contributions to the field of immunology: In other words, if you’re gonna talk to a guy about the influenza virus, he’s a good place to start.

Dr. Sharon Frey, the clinical director at the St. Louis University Center for Vaccine Development, explains that while there are a lot of influenza viruses out there, influenza A and influenza B are our greatest concerns in humans, as they’re the most likely to cause disease. From year to year, though, these viruses mutate extremely quickly, in a phenomenon known as drift. Sometimes, those changes are dramatic, potentially creating an influenza virus that could trigger a pandemic like that seen in 1918: This is called shift. These phenomena make flu a challenging virus to vaccinate for.

“Even on a good year, it’s only about 60 percent effective,” thanks to the fact that it doesn’t cover every single flu strain, says Fauci, but 60 percent is vastly better than zero percent. And researchers are working on a universal vaccine that targets a part of the virus that remains stable over time, a task that’s proving challenging, though Fauci says their work is showing promise. This work could allow people to get a shot that would protect against a larger number of flu strains.

But for now, “I just get sick anyway” is a common comment, and one Frey says is misleading. During cold and flu season, a large number of viruses are circulating, including a veritable smorgasbord of viruses that cause respiratory infections as well as flu strains that weren’t included in the annual vaccine. So it’s possible to get a flu vaccine and then get sick later with a different seasonal illness, she explains.

Another issue depends on the timing of the vaccine. People carry and shed the influenza virus without realizing they’re sick for a few days, and if you’re exposed before you get vaccinated, you’ll develop influenza whether or not you got the vaccine. Similarly, it can take a few weeks for your body to develop an immune response, explains Fauci, so immediate post-vaccine exposure could also make you sick. That’s why it’s important to get vaccinated as early as possible, says Frey, but also, “it’s never too late to vaccinate.”

And an infection can be serious business. Influenza isn’t much fun to have. “It’s a systemic disease,” explains Fauci. While you may have heard people refer to congestion and the sniffles as “the flu,” that’s imprecise: These symptoms are more commonly associated with a different kind of respiratory infection. Infection with influenza can include the sniffles, but also significant body aches and pains, fatigue, headache, intestinal upset, and sometimes fever, according to the CDC. In some populations, say both Fauci and Frey, influenza infection can be very dangerous: People at both extremes of the age spectrum, for example, along with immunocompromised individuals and people with lung, heart, or kidney conditions.

“Obviously, I don’t want to get the flu or any other secondary infection (viral or bacterial) that one can pick up during a bout of flu. It’s not just about not getting sick, it’s also about the recovery. I’ve reached a place where my body takes longer to get over things: a cold lasts a day or two longer than most people, a sinus infection usually ends up including bronchitis (and, often an extra round of antibiotic treatment),” says John N., a writer who was diagnosed with HIV in 1988. “My immune system is not as strong as it once was,” he comments, and a day of feeling a little tired and achy after a flu shot is worth it for him.

If you don’t get your flu shot, you’re not the only one at risk. People like John N. and Shayla Maas, a podcaster and writer, has difficulty forming immunities via vaccination, and can also get very sick if she contracts the flu. “My immune system is nonfunctional in a specific way,” she says wryly, noting that her partner gets the flu shot every year. “I don’t want anybody around me who doesn’t have their vaccines,” because it’s just too risky — and during flu season, she makes big lifestyle changes to avoid exposure to unvaccinated people, like going to the grocery store late at night and avoiding crowded spaces.

“You not having a vaccine puts me at risk of death,” says Maas, bluntly.

John N. remembers the swine flu vaccine scare of 1976 and the subsequent fear of vaccines among many Americans, which may have helped feed distrust of the flu shot today. He spent years avoiding the flu shot. Now? He gets one every year, and so does his husband.


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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Here’s How You Can Show Solidarity to Disabled Classmates

A person in a manual wheelchair holds a red laptop in their lap.

Back-to-school season can be a stressful time for members of the disability community, especially those who are entering new schools and new phases of their educations. Inaccessibility is a constant problem on campuses, and that doesn’t just include physical access issues like stairs, lack of interpreters, and unusable bathrooms. It also includes a campus climate hostile to disabled people, from professors unwilling to make accommodations to classmates who make thoughtless and sometimes cruel comments.

If you’re nondisabled and wondering how you can work in solidarity with disabled classmates — or disabled and interested in cross-disability advocacy — there are a lot of ways, from small to large, that you can make people more welcome on campus and in the classroom.

I talked to lots of current and former disabled students, as well as teachers, about their classroom experiences to learn more about things that helped them and things that didn’t. The most important bottom line, though, was this:

If you want to help someone, ask.

Every disabled person is different. Something that one person really appreciates will be actively unhelpful for someone else. Acknowledge that you see someone and are ready to help if they need it, but don’t force the issue.

Shelby Hintze commented that subtle help from her classmates made it much easier to accomplish activities at school without being singled out. People who offered to grab supplies or assist with getting things out of a bag or backpack made Hintze feel more at home in the classroom. “It’s exhausting to always ask for help so just be aware and say something like ‘hey, can I turn that in for you when I take up mine?”

Many of the people I talked with said they appreciated accessibility assistance and callouts, like moving obstacles so people can navigate the classroom freely, making sure there’s a clear line of sight to an interpreter, or making room for someone who needs to sit in the front row.

It’s also possible someone will say “no” to an offer of help, which is okay! Some people don’t need assistance or would rather complete a task in a way that works for them, so your offer of help may be appreciated, but unnecessary. If someone has accepted your help in the past, don’t necessarily assume the same will hold true every time you see them; check in first, unless it’s explicitly clear that your helping out has become part of a routine.

Disabled people also caution that it’s not okay to touch them or their accessibility aids — including service animals — without permission. If you go to school with a d/Deaf or visually impaired student, ask them the best way to get their attention before assuming it’s okay to touch them. In the case of students with mobility impairments, don’t grab them — even if you think they need help! Definitely don’t push a wheelchair or move a walker or cane; you could inadvertently damage someone’s equipment or increase their risk of injury.

Remember also that disability is not always immediately visible, and being disability-conscious all the time, not just when you see someone with a visible impairment, is good practice. If you’re conscientious when it comes to the way you talk about disability, it makes the disabled people around you feel safer and more welcome.

That goes double if you speak out against disablist comments, like dismissals or mockery of invisible disabilities like chronic pain and fatigue. That’s something you should be doing wherever you are if you’re nondisabled. Nondisabled people often assume there are no disabled people in the room, and that it’s “safe” to make inaccurate and cruel comments about disability. Make it clear that around you, it’s never safe to be disablist, because you’ll call people out.  While some disabled people feel able to speak up, others do not, and both may appreciate your advocacy in solidarity with them.

Samantha Reid, who has Crohn’s disease, commented that ignorance on the part of her classmates could be frustrating and harmful in school. Reid argues schools should include better outreach and education for incoming students, which is something students themselves can advocate for. Consider asking for a disability lecture series or pushing for the inclusion of disability etiquette guides in orientation material. Ask professors to include disability-related readings so you can engage with the community’s issues in a classroom environment. Call for accessibility committees to play an active role in organizing campus events.

And when the campus disability community stages protests and calls for help, show up. Work in solidarity with disabled students, whether they’re fighting to overhaul a campus building they can’t get into or demanding that professors include consistent accessibility information in their syllabi. Consider joining campus disability organizations if they’re open to nondisabled people, or asking if you can be on their mailing lists so you can keep up with planned actions and events that are open to the public.

The disabled people I spoke to want to be able to focus on learning at school, not stressing out about accommodations or feeling unwelcome in their campus communities. Being proactive about creating space for the disabled people on campus will improve your community, and you may learn some things along the way.

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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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Empower Your Students Through Disability-Conscious Teaching

Boy in wheelchair with classmates at school

Historically, disabled people have been subjected to isolated, segregated education. And there’s still a notion that a disabled person in the classroom is a shocking and novel thing, and disabled people don’t belong in school. In a classroom space where there are no visibly disabled people, teachers and staff may incorrectly assume that no one in the room is disabled — and thus that they don’t need to be disability-conscious.

Disability-conscious teaching should be the standard in schools everywhere, creating a more welcoming and inclusive environment for disabled and nondisabled students alike. Nondisabled people take cues about how they think about disability from teachers and other authority figures in their lives and receiving affirming messages about disability is one way to bring up a new generation of thoughtful people who value the disability community and its contributions to society.

For disabled students, disability-conscious teaching and the sense of “I feel seen” can be transformative; knowing that a professor recognizes their presence in the classroom and actively includes their experience in coursework can be empowering for people who are used to being hidden in the back of the room. Disabled students may struggle to pursue an education when they feel excluded by coursework and the classroom environment, and disabled people are overall less likely to have higher education degrees. There are many reasons for this, including the cost of college and disability discrimination, but the classroom climate can be a big factor.

With minimal instruction in disability-conscious teaching provided to most educators, it can be tough for teachers — even those with great intentions — to reach disabled students. I talked to an assortment of disabled students and educators to get some tips from them.

Many expressed a desire for educators to educate themselves about disability issues. It can be challenging to find comprehensive, accurate information if you don’t know where to start; calling on disability services to do orientations for teachers and provide information about disability in education is one way to do it. So is working on lecture series and continuing education options to learn about disability and keep learning.

While teachers and professors are required to comply with the law when it comes to accommodating students, that legal requirement doesn’t always translate into a real-world inclusive environment. Try to think above and beyond the law, especially since not all disabled students come to class with support from disability services. They may be trying to go it alone or may not think they need or deserve accommodations.

Building a better syllabus

Syllabus design came up very frequently in the conversations I had, because the syllabus often acts as an introduction to the class and the teacher. It can set expectations for classroom climate and may signal whether an instructor is inclusive.

In addition to any accessibility statement with information about accessing disability services and other disability resources, teachers can be more proactive. Teachers can consider listing  common accommodations and make it clear that they’re open to providing more if students want to talk with them about their needs. Especially in college, new students may not know what would be helpful, and seeing some examples — like the option of large print or digital assignments — could make a huge difference.

Access is key

Many students have spoken out about laptop bans, noting that they present challenges for disabled students — and getting an exemption can make a student stand out, which feels awkward. Consider not using a laptop ban in your classroom and rethinking other technology bans as well; some students record lectures on their phones, for example.

Accessibility applies online, too — and despite legal mandates, not all online classes and course management tools are accessible. If you or your school requires students to use an online platform for homework, class discussion, and other activities, is it accessible? If it’s not, have you pressured school officials to address issues and do you have stopgap accommodations in place for your students? Some things to think about include: whether videos are captioned and transcribed; whether users can adjust the size, color, and fonts for readability; whether a platform can be navigated with a screenreader; and whether a plain language guide to all features and contact information for support is provided.

Also consider how you structure your absence and grading policy. For example, some teachers announce that they will drop the lowest test grade from the semester, creating room for students who miss a test or do poorly for any reason, including disability. Similarly, not requiring excuses or explanations for absences can make disabled students feel safer if they need a day off.

Some teachers claim that policies like dropping test grades or not requiring perfect attendance will be “taken advantage of” by some students. Perhaps they will, but isn’t that the student’s problem, not yours? The benefits of disability-inclusive policies far outweigh the drawbacks; a student skipping some class because they feel like it doesn’t cause a disruption, while a student forcing herself to class even when she feels very ill is hurting herself to meet your expectations.

“Because I was graded based on the quality of my work instead of the number of times my butt was in a particular chair, I didn’t have to make myself sick(er) in order to get to class on days my body truly couldn’t handle it,” says Caitlin Nascher. Open policies like these also encourage clear, honest communication.

Making a disability-friendly classroom

If a student does come to you with accommodations recommended by disability services, work with the student on them — and don’t comment on whether you think the student “needs” those services. If you think the recommended or requested accommodations may be disruptive, do some brainstorming and researching on your own time to see if there’s a way to creatively problem-solve so the student gets what they need. Think “I see disability services recommended X, which might be a little challenging. One suggestion I have is that we could try Y, which might meet your needs?”

Beyond syllabi and accommodations, disabled students want to know that you have their back. Even if you think a room is filled with nondisabled people, be conscious about the way you use language and talk about disability to make it clear that disability is part of the fabric of society, and that you don’t see disability as a bad thing or source or shame. When students dismissively call things “crazy” or suggest that something is “retarded,” take a minute to challenge them and unpack the rationale behind those thoughts.

And consider that the topic of disability doesn’t have to be restricted to Very Special Lessons. Disability weaves throughout society, culture, and history. If you’re talking about the civil rights movement, include discussions of disability rights activism. If you’re teaching science, explore the disability implications of something you’re discussing, whether it’s CRISPR or experimental design. Push yourself to think about the disability angle when it comes to the topic at hand to create a more affirming environment for your students.

Creating a safer environment for your disabled students will help them live to their full potential in class, and their experience, knowledge, and thoughts will be beneficial for their classmates, too.


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.

Navigating the Twists and Turns of Healthcare as a Trans Disabled Person

Transgender flag pattern on the fabric texture

Statistics on the transgender community are hard to come by — we can’t even agree on how many people in the United States are trans. We do know, however, that trans people experience significant health care disparities, particularly in the case of trans people of color. And the scant data we have suggests the incidence of disability is higher in transgender communities.

But what’s it like to be trans and disabled wile navigating the health care system?

Many transgender people struggle with issues like provider discrimination, harassment, and denial of care, while disabled people experience their own share of health care discrimination. In combination, this oppression in the health care system can be dangerous.

Some disabled people have complex healthcare needs that are ongoing, requiring a never-ending parade of doctor’s appointments, medical testing, specialists, and wrangling with Medicaid or insurance companies. Being trans can complicate all of these things; a discriminatory Medicaid provider, for example, can make it nearly impossible to access treatment that a disabled person needs to maintain their quality of life.

Robert Hunt (a pseudonym), a 30-year-old legally blind trans man living in Indiana, is acutely familiar with the effects of this amplified, dual discrimination, especially since he is also biracial. As a Medicaid recipient and medical cannabis user in a state where it’s legal to evict people for being trans and where he can be denied coverage if he fails a drug test, he’s acutely aware of how easy it could be to lose access to health care.

By regulations, he can’t be prescribed any controlled substances, which includes testosterone, because he failed a drug test. The cannabis he’s using to manage the symptoms of the tumor that damaged his vision — a disability issue — is directly conflicting with his need to access transition services. Hunt turned to cannabis after the drugs his neurologist prescribed left him with unbearable side effects, and because it manages his pain more effectively than opioids, which he wants to avoid, if possible. “In this part of the state,” he comments, “there’s a huge opioid problem.”

Ignorance on the part of doctors when it comes to trans issues can pose a huge problem when he seeks access to health care; during an ER visit “that had absolutely nothing to do with transitioning at all,” he says, a doctor told him “that my breathing problems were probably because of my hormones.” He’s had trouble accessing pap smears, and has been told that his hysterectomy won’t be covered — even though his wife’s was — because he changed the name and gender marker on his paperwork.

His ultimate dream is to leave Indiana for Oregon, “so I can have everything that I need without being treated like a criminal.”

endever* corbin, a 33-year-old autistic writer and crafter who also identifies as crazy, experiences similar barriers to health care access. corbin has been navigating the mental health system through 14 years of transition. “There’s just the CONSTANT tension of like, you can find transition-related healthcare that is clueless about your disabilities, or you can find healthcare treating your disabilities that is clueless about trans identities.” corbin notes misgendering and deadnaming — using a trans person’s prior name instead of recognizing their current name, and by extension, identity — are common in some medical settings. In part, this is sometimes because trans people don’t have updated name and gender markers on insurance because of the cost, potential risk, and difficulty of changing their identity documents. This puts corbin at risk of outing, an issue for all members of the trans community but a particular problem for disabled people who may be in and out of the doctor’s office and other clinical settings frequently. Worries about mistreatment have led corbin to delay care.

For corbin this has huge stakes; disablist attitudes like the belief that autism somehow invalidates trans identities because autistic people just “think” they’re trans can make it challenging for corbin to access transition services at all. corbin has been “purposely hiding my currently higher support needs especially re: being autistic (like not using AAC at appointments, etc.) out of fear they would decide that I’m not competent to consent to surgery on my own,” for example.

corbin has also run afoul of Medicare guidelines on coverage for transition services; to be approved for transition care, corbin needs a recommendation letter than includes language suggesting corbin’s mental health condition is “under control.” Rates of mental illness tend to be higher in the trans community, and delayed access to transition can exacerbate those symptoms — the care corbin needs to feel better may be denied because corbin isn’t feeling better, in an unending circle of medical bureaucracy.

A growing number of healthcare facilities are thinking about trans competency as part of larger cultural competency training. However, without training in disability issues as well, this increased awareness will still fall short of the trans disability community’s needs, which are unique to the health care landscape, but not that unusual when one considers the overlap between trans and disabled communities.

Healthcare providers should be thinking proactively about this issue, using curricula developed by disabled trans people with health care experience who can offer the kind of comprehensive, sensitive training needed to increase understanding of trans disability issues. It should be possible for disabled trans people to walk, roll, or cane in to any emergency room or medical office and receive unprejudiced, holistic treatment.

For the disability community, this means recognizing and affirming trans identities in addition to acknowledging the health disparities the trans community faces. The disability community needs to be interacting directly with trans people to learn more about their needs and how to work in solidarity with them; the trans community is large, diverse, and complex.

For trans communities, disability inclusion is also vital, including promoting accessibility in trans spaces, acknowledging that members of the trans community are more likely to be disabled and to struggle with access to care, and challenging disablist rhetoric in transgender contexts. In institutional settings, gender clinics need to consider how disability may interact with trans identities and concerns — from how to coordinate inclusive medical records to how to help disabled trans people access the benefits they’re entitled to from Medicare, Medicaid, and insurance companies.

And for both communities, acknowledgment of these issues must come with an awareness of things that may have amplifying effects, like race, religion, social background, and cultural origins. Failure to engage with the full spectrum of diversity in disabled and trans communities will ultimately perpetuate a sense of exclusion among those most in need of inclusion.

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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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Shock Therapy is Still Legal. It’s Time to #StopTheShock.

Bright red text that says #StopTheShock.

The Judge Rotenberg Center, an educational and residential facility in Canton, Massachusetts, says it has a “near zero rejection policy,” accepting autistic people and those with developmental disabilities and mental health conditions whose families say they have nowhere else to go — “emotionally disturbed students with conduct, behavior, emotional, and/or psychiatric problems.” The facility claims to provide residents with opportunities to pursue “healthy growth and development,” but one of the things in its toolbox is so obscene that the United Nations has classified it as torture: The graduated electronic decelerator (GED), otherwise known as a shock device for “aversive therapy.”

“Students” at the JRC may be shocked for flapping their hands, standing without permission, tics, not following orders, and even screaming in pain because they are being shocked. According to the Autistic Self Advocacy Network (ASAN), in addition to causing pain, use of the GED can lead to burns — and long-term psychological effects. People who have been “treated” at the JRC have developed depression, anxiety, and PTSD.

The JRC is the only facility in the United States that uses GEDs, though it’s not the only one that uses aversives. Tactics used include pinching, forcing people to sniff ammonia, strapping people into white noise helmets, and other cruel practices that use the threat of fear and pain to get people to stop engaging in a behavior deemed antisocial or “harmful.” These practices are rooted in Applied Behavioral Analysis (ABA), a widely criticized and abusive form of “therapy” that positions autism — and autistic behaviors — as something broken within a person that needs to be fixed.

The JRC’s use of shock devices is well-known in the autistic and developmental disability community. It’s been a subject of protest and litigation for years, including a 1987 consent decree. But it comes as a surprise to many who are startled to learn that this happens routinely, and with the blessing of the government. Every child outfitted with a GED has been the subject of a court order authorizing its use, with the JRC claiming it’s necessary after all other options have been exhausted. Zoe Gross of ASAN says: “Although they say it’s a treatment of last resort, it’s not true, that’s their entire thing.” Shock is the thing that sets the JRC apart.

In 2016, it seemed like autistic activists were close to a major victory in their fight against the practice. The Food and Drug Administration drafted regulations barring the GED — but two years later, it has yet to finalize them. FDA Commissioner Scott Gottlieb could resolve the issue tomorrow with a signature, but he won’t. ASAN, ADAPT, The Arc, and other disability rights groups engaged in direct action and political lobbying — including delivering 290,000 signatures to the FDA and camping out at the FDA Commissioner’s house — earlier this year, rallying to “stop the shock.”

Now, advocates have been dealt another blow in the form of a court ruling in Massachusetts in which a judge determined that: “(The state) failed to demonstrate that there is now a professional consensus that the Level III aversive treatment used at JRC does not conform to the accepted standard of care for treating individuals with intellectual and developmental disabilities.” Parents gloated over the ruling, accusing the state of “subterfuge” to “discredit the school and its good work.”

This court outcome is further evidence that a federal ban is necessary, says ADAPT activist Mike Oxford, who has been heavily involved in working to stop abuse at the JRC. Gross notes that the JRC has deep connections in Massachusetts, including within the legal system, making it incredibly challenging to address the school’s practices via the courts of its home state. At ADAPT, Oxford says, “our national focus is on ending institution, broadly, keeping people from having to go in, helping people leave.” Barring the use of shocks at the JRC is one step forward, and with the school’s dependence on the practice, Gross says, it’s possible that a ban could pave a way to the ultimate closure of the facility.

Oxford ties the problems with the JRC to deeper disability rights issues of autonomy, independence, and the right to live in the community with appropriate supports. “Where are things breaking down? Is it that parents aren’t being supported? Yes. Is it because individuals aren’t getting sufficient types and amounts of services and supports that are needed to have a community be a workable option?”

Parents passionately advocating to allow the JRC to shock their children often claim they had nowhere else to turn, or were desperate. But Gross comments that the standard of care has evolved well beyond the use of crude aversives. Autistics like those currently trapped in the JRC demonstrably live rich, full lives in their communities, negating the notion that this is the only choice. “We have to make a stand against all these different forms of aversive treatment, people being put in coercive settings,” urges Gross.

The battle over the use of shocks to punish people at the JRC highlights the stakes of national disability organizing. Whether via the FDA or act of Congress, organizations like ASAN and ADAPT want to #StopTheShock, but they’re also pushing back on aversives, institutionalization, and the lack of services and supports available to the autistic community. We need cross-movement solidarity to accomplish these goals. Disabled people need to show up for the autistics among them to fight for their rights and against harm, because none of us are free until all of us are free.


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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Electronic Visit Verification: a Threat to Independence for Disabled People

A 3d rendering of a GPS route. There are red cars scattered about the map and two signals - one from a pole, and one from a drone in the sky.

Dennis Borel of the Texas Coalition of People with Disabilities sums up Electronic Visit Verification (EVV) in one crisp comment: “What am I, a felon? Put an ankle bracelet on me.”

If you’re not familiar with EVV, it involves the use of an electronic system to record hours worked by personal care attendants and certain other home services providers for older adults and the disability community. This may involve a purpose-built device, a phone application, or a web-based input form that can be accessed on a computer. With EVV, when people log hours, their employers must verify them at the time and location of service.

While many members of the disability community are gravely concerned about the rollout of EVV, it’s an issue that hasn’t captured popular attention, much to the frustration of advocates working on the issue. Many see it as a significant threat to autonomy and another example of the government’s war on the disability community.

EVV proponents claim this will reduce fraud by confirming that people actually worked the hours they say they worked. “You’re putting in a technological solution that they’re not asking for, for a problem that doesn’t exist,” says Borel. Anti-EVV campaigners say there’s no strong evidence for fraud in these settings, and that the cost of EVV far overrides any potential fraud-related savings. Fraud is more commonly the result of bad billing practices at agencies, not a consumer-level issue.

Many people are happy with paper or online timecards, which they say are accessible and work well; and as the ones receiving services, they have no incentive to collude with providers to lie about the hours of care provided, as they’d only be defrauding themselves.

Robin Bolduc, a Colorado woman who provides attendant care for her husband, puts it bluntly: “EVV doesn’t address fraud or quality of services. A ton of money will go to the EVV vendors,” who just happened to spend a lot of money lobbying for EVV.

There are a lot of problems with EVV that have disabled people raising concerns. One is the rigidity of the system, which in some cases could require people to wake up in the middle of the night to sign off on hours. For others, people who perform multiple kinds of services may struggle to classify them. What happens when someone walks into the house, helps someone with toileting, washes some dishes, and then preps some medication? These may be classified as different services, and have to be logged independently. Problems with logging services accurately are a big concern, says Borel, who notes that it’s already hard to find qualified workers and worries EVV may be a deterrence.

But the big thing about EVV that’s causing alarm is the use of GPS tracking and in some cases cameras and microphones, especially in Ohio, which has rolled out what Kendra Scalia of Stop EVV describes as the “most onerous” version of EVV (the state claims cameras on the devices have been disabled). GPS tracking tells the government where services are delivered…but it also tells the government where disabled people are going. EVV data can show where disabled people go to church, school, or shop, and this compromise of privacy extends to family too — Melissa Milinovich, another Ohio consumer, has a young daughter and EVV will allow people to effectively track her child.

These factors, critics say, may force disabled people back into institutional settings. Some are opposed to what feels like a profound privacy violation and/or worried about being unable to find providers who are willing to work with EVV. If they don’t have private funds to pay for care, an option not available to many disabled people, they may be stuck in nursing homes.

Before you blame the current administration, you should know EVV was baked into a law from the previous administration, the 21st Century Cures Act, signed in December 2016. A mandate for EVV was slipped in at the last minute, and while the logistics are vague, the requirements are clear: States must implement EVV for people receiving personal care services by January 1, 2019, and for Home and Community-Based Services clients by January 1, 2023.

That combination of vagueness and rapidly-approaching deadline is a big problem, according to Bolduc. While she feels the state of Colorado has done an excellent job with soliciting stakeholder input and communicating with the disability community, the feds are still stonewalling the state, she claims, making it hard to move forward.

A bill that just went to the president for signature would slow the rollout, providing more time to develop effective EVV options that also respect privacy. And a recent Supreme Court decision, Carpenter v United States, is being viewed with optimism, because it affirms the right to privacy, an issue at the core of the EVV debate.

Disability activists who want to get involved with EVV issues in their states may want to start with Stop EVV, a nationwide advocacy group. Individual state disability rights groups are also providing outreach, education, and policy advocacy.

Without engagement from the disability community, EVV — and all the accompanying problems — may be unstoppable. Those who don’t use consumer-directed care services currently should work in solidarity with their fellow disabled people on this issue, and not just because their circumstances could someday change. An attack on the privacy and autonomy of one corner of our community is an attack on us all.


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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Before You Offer Unsolicited Mental Health Advice on Social Media, Read This.

A person's hands holding a cell phone with message bubbles coming out of it, in front of a laptop.

If you have a mental illness and you talk about it on the internet, someone is bound to respond almost immediately with unsolicited advice. Have you tried medication? Have you tried not taking medication? Meditation? Crystals? Yoga? A fad diet? “Cure evangelism” is a popular occupation on the internet, with adherents convinced that they have all the answers to your healthcare needs — regardless of their qualifications, whether they’ve spent any time with you, or if you even asked for their help.

“I don’t normally do this, but…” someone says to me at least once a week, messaging me to tell me all about how I should be managing my mental health. Even if I explicitly say I’m not asking for advice, people provide it anyway.

This makes it tough to be open about mental health, and to have good conversations that reduce stigma by helping people feel less alone. Sometimes I want to make a comment on social media about a tough day or a weird self-discovery and I have to weigh whether I’m really prepared to deal with the inevitable subsequent tide of “helpful advice.” Choosing silence hurts mentally ill people who might otherwise see themselves reflected in frank talk about living with mental health conditions, and it keeps mental illness a mysterious, ominous thing instead of a reality for millions of people.

I talked to several other people who are openly mentally ill on the internet about how they cope with unsolicited advice.

I rarely respond to people, especially strangers, popping up to tell me what to do, and I mute or block them on subsequent offenses. That said, it’s important to understand that while “don’t feed the trolls” is advice that works for some people in some circumstances, it’s not for everyone — and if it’s not for you, that’s okay! You shouldn’t feel bad about choosing to engage with them, whether you’re clapping back or using it as a teachable moment, and your decision to respond to some people and not others is also valid.

“I had to learn to put myself first, and to not pick up baggage that is not mine,” says Jess, who is very selective about engagement with cure evangelists. “It’s their own stuff, I don’t need them to save me, I didn’t ask for their input and so I am under no obligation to engage in it.” Instead, Jess focuses on offering solicited advice to people reaching out to her for help.

Val, who has bipolar II, prefers a firm dismissal when faced with tips from strangers. “I’ve found the most effective response to be: ‘I’m under the care of excellent medical professionals and we’ve decided that medication and therapy are the best route for me.’” This to-the-point reminder about boundaries and privacy is a good one. You could even take it a step further: “Thanks for your interest, but the management of my health is a private matter.”

Some people, like Becky, use a “bury them in science” technique, responding to helpful advice with a dose of evidence-based information. “I teach molecular biology, so when someone tries to tell me to use yoga or mindfulness or goji berries to cure my depression, I start explaining to them how SSRIs work. With diagrams of synapses, if possible. I also start talking about genetic variations in MTHFR, but I don’t abbreviate it; being able to rattle off ‘methylene tetrahydrofolate reductase’ without pausing seems to really unsettle them.”

ace ratcliff frequently ignores would-be helpers in their mentions, but when they do educate, it’s often for the benefit of people reading the thread, not necessarily the person making clueless comments. “I’ve found that engaging with it does very little except make me extremely irate. If I’m in a good spot where I have energy to spare, I might reply to them with a clear correction and a link to supporting evidence — I always assume someone might come along and have the same incorrect mindset about something and might quietly learn something in the background.”

Fighting internet cure evangelism doesn’t just extend to mental health — pretty much every disabled person is familiar with being deluged by “help” when they mention health issues or other concerns online. If you want to fight the trend, start by not contributing to it yourself. If you’re tempted into a “I don’t usually do this, but…” ask yourself whether you think this person has heard this advice before, whether you’re familiar with this person’s medical record and history, and whether this person is talking in a way that suggests they want advice.

Also, don’t be afraid to intervene when you see it happening to someone who explicitly welcomes such assistance. Either ask before stepping in (“Do you want me to take this one?”) or take note when people comment about whether they are comfortable with getting support from people in incidents like this. If you do intervene with consent, be sure to untag the original target of the advice, if possible, so they don’t have to see your back-and-forth with the offender. Bystander intervention can alleviate stress for the targets of such “help” and it also warns other would-be “helpers.”

If the thought of confronting someone over inappropriate behavior makes you feel uncomfortable, you’re not alone! Feel free to write yourself up a little script to use. “Hey, she didn’t ask for advice — if she needs it, I’m sure she’ll reach out.” “I’m sure you mean well, @ablesplainer, but offering unsolicited advice to people who just want to talk about their lives isn’t cool.” If you know the person, you may wish to consider approaching them privately; people can be less defensive and more open to a conversation in this setting.

If you have a nugget of advice you just can’t keep to yourself, try reframing the way you offer it with a statement that makes it clear advice is available if wanted, but won’t be forced on someone: “You definitely aren’t the only one who feels this way! I know this diagnosis is pretty new for you—happy to lend advice since I’ve been around the block a few times.”

Dealing with unsolicited advice online or elsewhere can be frustrating and sometimes it seems endless, but you’re not alone. Know that there are lots of ways of dealing with it, they are all valid, and you can experiment to find the one that works best for you. And the more we collectively talk about this behavior and push back on it when it happens, the fewer excuses people have for engaging in it.


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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It’s Time for LGBQTIA+ Communities to Celebrate Disabled People

A supporting hand waves in front of a rainbow flag flying on the sidelines of a summer gay pride parade

LGBQTIA+ spaces are supposed to be environments where we can be our true, authentic selves without stress. Where we can revel in being surrounded by our people, feeling safe and at home; places of queer joy, shared rage and frustration, commiseration, co-conspiracy.

But for many multiply marginalized LGBQTIA+ people, that’s not the case. Instead, these spaces can become acute reminders of outsider status, whether someone is a queer Muslim who encounters Islamophobic attitudes or a Black woman challenging the inclusion of police in Pride celebrations. Some LGBQTIA+ members of the disability community experience similar frustrations, feeling excluded both physically and emotionally from spaces that claim to be welcoming to all.

“I constantly have to talk about this. I’m not allowed to just relax, almost anywhere, anymore…I am not a priority. People like me never are,” says Noor Pervez, a community organizer and activist who feels exclusion in queer spaces, disability spaces, and Muslim spaces alike.

The issue of physical access often makes people think of wheelchair users and accommodations like ramps, wide doorways, grab bars in bathrooms, and conscientious room layout to make sure they can enter and move freely. But physical accessibility runs deeper than this, encompassing people with a variety of mobility impairments as well as people sensitive to light and sound and those with other access needs. Pervez says “access isn’t some frilly excess thing,” but it’s often treated like one.

“Before it shut down the local LGBT Center was not accessible at all — the entrance had I believe five steps to get up. Many important meetings and events, as well as the biggest queer library in town, were held here,” says Rain Chamberlain, who has experienced a litany of access issues. This trend, of queer student centers, community gathering spots, and similar locales being located up stairs or in buildings without elevators, repeats itself across the United States. It’s hard to feel welcome when you can’t get in the door.

Emotional access is something slightly different. In a perfectly physically accessible place, it’s still possible to feel deeply emotionally unwelcome. Maybe that comes in the form of disablist rhetoric from people giving speeches and presentations, or prejudiced comments from people in the room. Liz Moore, a disabled activist, has a vivid memory of attending a DC Dyke March where a presenter refused to speak without an ASL interpreter: “I remember the crowd getting restless: wanting the speech to start, wanting the March to start, wanting to be out of the heat. There were a lot of questions about why we were waiting, and probably a lot of ignorant questions about ASL and Deaf culture.”

Pride month is a particularly apt time to think about how to include members of the disability community more proactively in LGBQTIA+ spaces, but as a reminder, this is an issue that persists long after the confetti has been cleared from the streets. If your favorite hangouts, events, and organizations don’t include visibly disabled people or people who identify as having invisible disabilities, ask yourself why not, and what you can do about it. Conscious disability inclusion is an ever-evolving activity and something that everyone — including disabled people — needs to work on continuously.

Disability awareness consultant and podcaster Andrew Gurza is acutely familiar with a sense of exclusion in queer spaces, where he sometimes encounters pitying looks or is told to leave the dancefloor because his wheelchair is “in the way” in the eyes of nondisabled attendees. “I think we are excluded from queerness; in our parades, in our clubs and in our vision of sex, and that hurts. More so than being excluded on the basis of physical access alone, being excluded emotionally is one of the hardest parts about being a queer cripple.”

Maggie Tiede expresses frustration with another pressing issue the LGBQTIA+ community struggles to deal with: The lack of options for events for people who can’t be out late, go to bars, and engage in other activities that assume a child-free, youthful, nondisabled status on the part of participants. “The fact that the only alternatives that seem to get organized to a racist and overly commercialized Pride are intense, late-night, substance-heavy theatre events is frustrating!” For LGBQTIA+ people who want more family-friendly options, daytime entertainment, or queer events where substance use and highly stimulating environments aren’t the norm, it can be hard to connect with the community. “I actually feel like I don’t know where the queers are gathering in my city, just a subset of disabled queers and allies,” comments Moore.

It doesn’t have to be this way. Pervez has fond memories of disability-inclusive radical queer spaces “back home,” for example. It’s possible to build such spaces, with disabled people in leadership and with a leadership that isn’t uniformly white and cis, either. Using access checklists and recruiting disabled leadership from the start can radically improve physical and emotional access alike, just as explicitly including disability in codes of conduct and anti-harassment policies can make it clear that event organizers affirm disability as a marginalization and will not tolerate abuse of disabled attendees and participants.

But to do so, the LGBQTIA+ community needs to acknowledge that there are cripples among them. Given that LGBQTIA+ people are more likely to be disabled and less likely to be able to access adequate health care, this is not a hypothetical: Disability inclusion is LGBQTIA+ justice, because disability rights are deeply connected with the struggle for LGBQTIA+ liberation. Are queer spaces ready for the radical step of admitting that disabled people belong among them, and in fact have experience, skills, and thoughts that can further the cause?

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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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In Case of Emergency, What Happens to Disabled Students?

A row of red emergency alarms mounted to a brick wall.

One of my most vivid third grade memories involves a fire drill. While the bells clamored overhead, we dutifully streamed out the door of our ground-level classroom, proceeding down the ramp to our required assembly point on the playground, near the swings. But one of my classmates wasn’t with us: A student with Down syndrome who hated the sound, and sat frozen in the corner of the classroom while his aide pleaded with him.

“Don’t be scared,” she said, and I wondered how much scarier it would be in an actual fire, with the noise and billows of smoke and the flicker of light and shadow. The school never did change its protocol for fire drills to accommodate him.

Fortunately, there was never a real fire during my time there.

School safety and security procedures are in the news a great deal recently, primarily in the context of emergency drills for mass shootings, and how schools respond when a hypothetical nightmare becomes real. We didn’t have lockdowns in school when I was growing up, so I don’t know the peculiar, habituated terror of going through the motions to hide from a hypothetical mass shooter, nor do I know the jolt of adrenaline of hearing that it’s not a drill. Both of these things happen far too often in schools across the United States.

They’re not the only examples of emergency preparedness: Schools have to hold drills for fires, tornados, and other events, like earthquakes. All designed to develop muscle memory for students, so they know exactly what to do and where to go when the alarm sounds.

Ask yourself: how recently has your local school district updated their disaster planning? Have they directly engaged disabled students and faculty in preparing for the worst in a fashion that’s truly inclusive?

There are many accessibility factors to consider. What if you can’t hear the alarm sounding? What if the flashing lights induce a seizure? What if your classroom is on the second floor and you’re barred from using the elevator? What if the sound overloads you and you feel helpless, trapped in the middle of the chaos? What if you’re a disabled student and the nature of your impairment makes it difficult — or even impossible — to get out? What if you’re a disabled teacher, paraprofessional, or staff member trying to look out for the welfare of your students while also addressing your own access needs?

Are we failing disabled students? Elijah Armstrong, a student advocate and junior at Penn State, says he thinks we are.

“There was a lockdown that happened during the day, but they didn’t account for me,” he says, narrating the story of a lockdown — not a drill — from his time in high school. “For a brief period of time, I was wandering the halls, not sure where to go.” Armstrong had been receiving tutoring, and was on campus even though he wasn’t in class. Eventually a school official found him and took him to the library.

He says this failure of access reflects larger problems with access in school settings. “I think a lot of times, people, even with the best of intentions, will go in and say and ‘this is what we’ll do, and later we’ll figure out what to do with students with disabilities.’ That leaves a disconnect, especially because the plan doesn’t necessarily go off as cleanly as it does in an ideal situation.” This failure to think accessibility first, he says, leads to situations where disabled students aren’t included in disaster planning and are left at a disadvantage, feeling like they can’t assume school personnel have considered their needs.

Disabled people are often required to be proactive about making access requests for fear that they haven’t been considered, or counted. Those fears are grounded — Josh, a disabled Texas public school teacher, expresses frustration: “I do not believe that emergency drills do enough to help faculty prepare to serve their disabled students and co-workers during emergencies. For example, I have had students with mobility and hearing disabilities, but I’ve never been trained how to accommodate and assist them during fire drills, tornado drills, or lock-downs.”

Like Armstrong, he believes “accessibility first” should be a planning watchword: “If a disaster or emergency is worth preparing for, then we owe it to each person on campus to include their needs in the plan.” Treating access as an “afterthought,” says Armstrong, creates a perfect storm. So does not including disabled people as advocates in disaster planning. The people most suited to describe access needs, and to bring up issues that have previously gone unrecognized, are disabled people themselves, but they’re not necessarily included in conversations about emergency preparedness in schools, or the planning for schools and districts that want to update their procedures.

Armstrong notes that student activists often play an active role in advocacy around a variety of campus issues, including accessibility, but that this isn’t entirely fair. “The onus shouldn’t be on them,” he says, adding: “We need to do better to make students safe.”

My classmate all those years ago could have been in life-threatening danger in a real emergency, just as Armstrong could have been killed if the lockdown had involved an active shooter, or a wheelchair-using teacher could be trapped in a hazardous room during a weather emergency. These problems are not the result of disability; instead, they are the result of indifference to disability, and a refusal to incorporate access into disaster planning from the start.

With emergency preparedness on people’s minds, now is the time to take action: Contact your school district to ask whether disability is included in their disaster planning. Ask schools for copies of their handbooks so you can evaluate what they’re calling “disaster planning.” Consider running for school board or supporting a school board campaign that prominently includes disability in its platform. Do what you can to make change, because safety must include everyone.


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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Are We Turning a Corner on Discussions of Gun Violence and Mental Health?

Content note: this post discusses gun violence, mental illness, and sexually abusive behavior.

Like many of us living in the United States, I’m constantly bracing for the news of yet another mass shooting. As a human, I’m horrified by the rising death toll connected with guns in the United States — the vast majority of which does not take place in mass casualty contexts — but as a mentally ill person, I’m also incensed by how quickly people rush to blame mental illness in the wake of such events. When the internet started discussing the recent shooting in Santa Fe, Texas, which claimed ten lives, I coiled up with tension, fearing the inevitable rhetoric about madness and how “no sane person” would commit such a horrible crime.

What happened next honestly shocked me: Instead of immediately rushing to blame mental health conditions for the shooting, many people started talking about misogyny and toxic masculinity. For a moment, it felt like decades of activism around this issue have finally brought about change, refocusing the gun violence conversation on the real cause. My usual approach to making people understand this is a disability rights issue was upended: Instead of asking people to stop blaming mental health conditions for violence, I was struck by the fact that people weren’t rushing to draw a false mental health connection.

Historically, the aftermath of rampage violence like this focuses in on accusations of mental illness for the killer. Mentally ill people are less likely to perpetrate crimes but more likely to be victims, while relatively few rampage killers have actually been mentally ill. There’s not just a disablist component, though. There’s also a racist element to how people talk about violence: People accuse perpetrators of color of being “terrorists,” in an equally unfounded and hateful attribution of blame. In the case of white perpetrators, claiming that “mental illness” is responsible allows people to dodge hard conversations about social factors like white supremacy and male entitlement, and it’s astounding to see people openly confronting those in the wake of the Texas shooting.

The media is certainly playing a role. A growing number of major media outlets, including those that provide guidance on reporting, like Poynter and the AP, have started explicitly pushing back on mental health narratives almost as soon as news drops. The voices of people who are mentally ill are clearly being heard, even as people in the high ranks of government — many of whom benefit from NRA support — call for abridging our civil rights in the name of “public safety.”

Some have definitely brought up mental health in their attempts to explain away this latest shooting. And a lot of the reporting around the case has taken a misogynistic tone. The shooter stalked and harassed a female classmate who wasn’t interested in him, and some media outlets along with the killer’s own father have turned this into a story about “bullying” or “rejection.” This suggests she was somehow responsible for his decision to enter the school and start shooting.

It feels like creeping uphill towards progress — sometimes we make gains, and other times, we slide backwards. Some of that backwards slide includes the emergence of new inaccurate and hurtful rhetoric. People styling themselves as experts on “incels” — men who call themselves “involuntarily celibate” because they aren’t in sexual relationships and they want to be, and believe they are entitled to women’s bodies­ — are evoking autism and suggesting it is to blame for “social awkwardness” that makes it hard to find dates, along with hateful behavior. Oliver North blamed Ritalin, a drug used by some people with ADHD, for the Texas shooting. Mental health activists need to work in solidarity with other disabled people to ensure society doesn’t simply shift the blame onto another segment of the disability community.

It’s heartening to see a shift in attitudes that has been a long time coming.

The shooting took place in the midst of a larger discussion about so-called “incels.” It’s also happening at the time of #MeToo, where the consequences of unchecked male entitlement are coming into focus for people who may not have considered these issues before.

But disability rights activists should get at least some of the credit on this one. Watching mass shootings and subsequent commentary play out over the last few years, I’ve been struck by a slow move away from automatically attributing such violence to “mental illness.” That’s been a direct response to our work.

We should be proud of the change we’ve been able to create simply by refusing to stop applying pressure. This is a disability rights issue, in the sense that mentally ill people don’t deserve to be scapegoated for something that is not their fault. It’s also a larger social issue: If we’re talking about the wrong thing when we talk about gun violence, we’re not going to be able to stop gun violence.

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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We Want YOU to Support the Disability Vote (A Voting Accessibility Guide)

A pile of red, white, and blue buttons that say 'Your vote counts."

The 2018 midterms are upon us, and 35 million disabled people in the U.S. are theoretically eligible to vote. But how many will cast ballots? Our voter turnout consistently lags far behind nondisabled people, especially in the case of people with mobility impairments, cognitive disabilities, and intellectual disabilities.

It’s not necessarily that we don’t want to vote, but that society creates barriers — like voter ID laws or “mental competence” regulations — that make it difficult. Sometimes, inability to vote comes down to a lack of access: Polling places may be set up in locations that don’t meet accessibility standards of the Americans with Disabilities Act (ADA), or poll workers may not have accessible materials and equipment. While requesting an absentee ballot may be an option, it shouldn’t be the default response to inaccessibility: We deserve the right to vote in person.

One way to increase polling place accessibility is to get involved as a poll worker — your city or county clerk can provide you with information about volunteering. Another is to advocate with local election officials for disabled voters — whether you’re disabled or not.

Taking action now, not in November, is critically important. Selecting polling places takes time and sounding the alarm about inaccessibility will increase the probability that local officials will pick an accessible site. It’s also important to make sure officials get advance notice on what they need to think about for Election Day accommodations.

When advocating on this issue, encourage officials to consult a disabled person with expertise in accessibility and accommodations in the development of polling place locations and policies, and to include this person in site inspection and setup as a troubleshooting resource.

The Polling Place: Yes, the ADA Requires Polling Place Accessibility

Selecting an ADA-compliant site can radically increase the probability that disabled people will be able to enter to cast their votes. Unfortunately, polling places often wind up in churches (which are exempt from the ADA) or older buildings that are fully or partially inaccessible, even though this not allowed. In 2016, two thirds of polling places had at least one accessibility issue.

So what does accessibility look like? Remember that “theoretically accessible” and “actually accessible” are two different things.

Some starting questions: Is there accessible parking nearby? Is there a drop-off area in front of the accessible entrance? Does the building have ramps and railings? If not, can temporary ones be installed for Election Day? Are there protruding objects like posts, curbs, or signs that might catch blind and low-vision people? Are doorways wide enough for wheelchair users? Is there an accessible bathroom in working order that isn’t blocked or being used as storage? If the polling place is upstairs, is there also an elevator? Can wheelchair users safely navigate in the space, including around bulky voting machines, tables, and chairs? Addressing access can also improve crowd flow, which benefits everyone!

The United States Department of Justice provides a detailed checklist for physical accessibility that you can print out and bring to local officials, though many states have their own accessibility checklists, like these examples from Ohio, Michigan, and New Jersey.

You can also think beyond required physical access. For example, seating for people who get tired if they stand for too long can make polling places more welcoming. Likewise, choosing a location near a well-serviced transit route increases the chance that people can get to the polls on Election Day. Thinking about issues like scent or chemical sensitivity should also be factored into discussions about where to situate a polling place.

The Voting Process 

Large print and plain language instructions should be available so people can vote independently. Access to multilingual material is important, along with standby translators and sign language interpreters to assist voters. Every voter should be able to obtain the information they need in order to vote independently.

Accessible machines should be properly serviced and in working order. What happens if there’s only one accessible screen for blind and low-vision voters and it breaks? One way to get around this is to follow the National Federation for the Blind’s recommendations and simply make all voting machines accessible, or to adopt a tablet voting system like in New Hampshire.

Polling places should include at least one wheelchair-accessible voting booth that is private, along with a check-in table that accommodates wheelchair users. Remember that more than one disabled person may want to vote at once, so the more accessible options you have, the better! If someone’s stuck voting in the middle of a crowded room with no privacy, that’s not okay.

You may have heard of workarounds like polling place workers filling out ballots for people, or carrying ballots out to the vehicles of people who can’t get inside. This deprives people of their right to a secret ballot, and is not an acceptable workaround for inaccessibility.


It’s important for polling place workers to receive accessibility and sensitivity training. This should include instruction on the accessible features of voting equipment, so they know how to assist disabled voters. They should also learn to avoid making assumptions about people’s disabilities or asking intrusive questions, unless a disability-related query may be necessary for problem-solving inaccessibility at a polling place.

The bottom line: It’s highly probable that someone needs to open up a conversation about voting accessibility where you live, and you might be a good person to start that conversation. If you don’t have experience in advocacy or working with government officials, it can be uncomfortable or even scary to start conversations like these. One option you may find less stressful is sending an email or a letter, rather than calling or coming to an office in person. If you get the brushoff from the people who administer elections, consider going to an elected official: It’s their job to represent you…and you might want to note that they can’t represent you if you can’t vote.

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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What’s the Point of Trigger Warnings?

A bright red light shining against a black background.

Trigger warnings are an incredibly contentious subject, from op-eds insisting that they’re ruining higher education to complaints that they’re wildly overused to a high profile author mocking them in the title of a book. But the conversation about trigger warnings that takes place outside of disability spaces often leaves something out. Are they not, at their most fundamental, an example of a basic accommodation — a measure taken to ensure that disabled people can fully participate in a given environment?

First, a note: Gun violence survivors argue that “trigger warning” as a term can itself evoke a strong emotional response, and many prefer the use of terms like “content note,” which is what I’ll be using throughout this piece. I add this explanation not simply so readers understand my decision to change the language I’m using, but to highlight how content warnings and language choices can be used to accommodate, or exclude, disabled people. Gun violence survivors can deal with significant, sometimes disabling mental health challenges like anxiety, depression, and PTSD — choosing a less evocative term is an accommodation.

Content notes appear to have originated on feminist blogs, which frequently talk about emotionally charged topics like sexual assault and wanted to warn readers that they might experience content that would remind them of past trauma. The notion of a “trigger” warning referenced common parlance among communities of people with PTSD, who refer to a stimulus that can provoke a strong emotional response as a “trigger.”

But content notes began to spill over from the feminist blogosphere, showing up on sites like Tumblr and in other settings where socially conscious people wanted to talk about difficult issues while still giving people an opportunity to proactively opt out. Expectations for what might necessitate a warning also began to expand — not just sexual assault, for example, but also violence. The objects of phobias. The use of slurs. Stories about -isms, like racism and disablism. Expectations that people should be warned if they might encounter something that could reopen past trauma also filtered to college campuses, where some professors began actively using content notes, while others began aggressively campaigning against them, claiming they were a form of coddling or censorship. The backlash had begun.

The way we talk about content warnings has evolved. The leap into the larger consciousness when it comes to seeing warnings on social media, college syllabi, and at events has led to calls that they “go too far” or are exceeding their original purpose. People who make those comments, however, often ignore the disability roots of content warnings. This is not about protecting people from something “upsetting,” but about preventing a serious psychiatric reaction.

Few people with conditions like PTSD would argue that it’s possible to avoid everything that may provoke trauma or extreme responses, or that permanent avoidance will help them recover. But warnings, say some, help them prepare for engaging with media, or help them determine if and when they should read or view something. While some argue that systematic desensitization, as used in treating phobias, is a good approach to treating PTSD and other trauma-induced conditions, it should be noted that this treatment takes place under supervision in a controlled environment, and with active consent on the part of the patient.

For people who have experienced trauma, the presence of content notes can make it significantly safer to navigate the world, reducing the risk that they’ll be surprised with something that evokes an abrupt, powerful response. The experience of panic attacks and other extreme reactions isn’t one of “hurt feelings,” as opponents of content notes seem to believe. These responses can be both psychological and physiological, and may render people unable to function for hours, sometimes days. This sounds an awful lot like a disability issue to me: Exposure to specific content can disable people, while accommodating people by providing them with content notes allows them to more fully engage with society.

That’s not to say content notes are perfect — there are many cases when it’s impossible to warn for something, and people can be taken by surprise. Rooted in Rights writer Alaina Leary shares that “it’s very difficult to be accessible for every person,” but she doesn’t think that’s a reason to stop trying. Some people may have strong reactions to unusual things — a specific shade of blue, the sound of a white noise machine, the smell of frying onions — and there’s no way to warn in every conceivable circumstance. But the growth of content notes to expand and cover more issues, says Leary, is a sign of increased interest in accommodating people.

Leary also comments that in many of the spaces she frequents, people will proactively request accommodations in the form of asking for warnings about content that people might not normally warn for, like parent death for someone dealing with a traumatic loss. There is also, she notes, a precedent for warning people about content that may cause problems for some viewers, in the form of epilepsy warnings attached to videos. “I think awareness is a big part of why epilepsy has been warned for more often,” she says, but she also cites stigma as a barrier in the conversation about content warnings. “There is this stigma against mental health: ‘Why can’t you just get over it?’”

She says content warnings don’t necessarily work for her personally — some of the things that spark reactions are obscure, and in other cases, “no amount of warning” can prepare her for something. But as a member of the media and a survivor, she still thinks they’re important. Accommodations don’t have to work perfectly for everyone all the time in order to be useful, and accommodations that aren’t relevant to one person’s needs may be very helpful for another; the presence of functioning and usable captioning devices in movie theaters, for example, is something I believe should exist even if it doesn’t (currently) help me personally in any way.

Those arguing against content warnings are effectively saying that disabled people aren’t welcome in society, for many such warnings are rooted in disability issues. And they’re saying that people who proximally benefit from accommodations without being disabled also don’t have a right to participate in society. This is a troubling assertion to make, and one that people should rightly be wary of. Arguing against accommodations creates an entry for those seeking to justify their resistance to access and inclusion, and that is a door that should remain firmly closed.

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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

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

Judi Chamberlin: Mad Pride and the Fight Against Institutionalizing Women

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Content note: this post discusses miscarriage, mental illness, and forced institutionalization.

It’s Women’s History Month, which makes it an excellent time to talk about the fact that women’s history and disability history overlap significantly; notable women from Harriet Tubman to Helen Keller have been disabled trailblazers for social justice, including women’s rights. To do so, however, they had to fight not just sexism and racism, but disablism: Their disabilities were used against them to dismiss their activism, including by historians talking about their work. Using disability status to suppress women and their work is an ancient trend. This includes not just physical disabilities but also psychiatric ones — mental illness has been weaponized to institutionalize outspoken women, undermine women’s fight for equality, and justify the mistreatment of women across cultures and eras.

Numerous women in history have pushed back on the use of psychiatric diagnoses like depression, schizophrenia, and bipolar disorder to marginalize women, a practice that has its roots in terminology like “hysteria.” One woman, Judi Chamberlin, didn’t just fight for the civil rights of mentally ill women — she questioned the entire framework of how we talk about mental health conditions as an integral member of the Mad Pride movement. She felt strongly that mental health conditions were more complex than simple medical issues. Chamberlin argued that society contributes to the experience of mental health and that societal stresses can be used to medicalize people. Thus, natural emotions in response to life experiences like the death of a loved one could be twisted into evidence of pathology, for example.

Members of the Mad Pride movement may also identify themselves as psychiatric survivors, referencing a long history of abuse and mistreatment at the hands of unscrupulous members of the psychiatric profession. They argue that madness is a natural facet of the human condition, and something to be cherished as part of someone’s identity — some are not interested in medication and other treatments. Mad Pride is a person-centered movement that believes it’s important to empower people to make their own choices, recognizing that there isn’t a one size fits all approach to living with mental illness.

Chamberlin’s role in the movement intersects heavily with how psychiatry has been abused to keep women in the margins. She was forcibly institutionalized in 1966 after she had a miscarriage and sought help with depression. Her doctor suggested she go to the hospital, which she did — and then she discovered that she couldn’t get out. During her time on the wards, she witnessed the abuse of other patients and quickly learned that she’d need to lie if she wanted to secure her release, hiding her feelings and performing for the people around her to project an image of recovery. She reflected:

“I was consumed with the clear conviction that there was something fundamentally wrong here. Who were these people that had taken such total control of our lives? Why were they the experts on what we should do, how we should live? Why was the ugliness, and even the brutality, of what was happening to us overlooked and ignored? Why had the world turned its back on us?”

Chamberlin took that feeling with her when she left.

She joined the Mental Patients Liberation Front in Boston, along with other organizations run by people who identified as psychiatric survivors, including MindFreedom and the National Empowerment Center. In 1978, she published On Our Own: Patient Controlled Alternatives to the Mental Health System, which became a foundational text for members of the Mad Pride movement.

She also worked with the National Council on Disability on a 2000 report that centered the voices of people with psychiatric disabilities in a conversation about human rights in the context of psychiatric care. Along with others, she argued that regardless of “good behavior,” people should be allowed to wear their own clothes, receive visitors, and leave the grounds while in residential care. These things, she said, should be treated as basic rights, not things contingent on doing the things personnel in psychiatric facilities want patients to do; deprivation of these rights is an injustice. She also worked on the United Nations Convention on the Rights of Persons with Disabilities, a document the United States has yet to ratify.

Chamberlin died in 2010 of her underlying lung disease at the age of 65, a great loss for both the Mad Pride and disability rights movements. Her innovative work was remarkable on many fronts, but one was the ability to balance and respect different ways of approaching mental health conditions. While she may have taken a Mad Pride approach to her own life, she was careful to avoid invalidating the experiences of others, defending, for example, the use of psychiatric medication among people who benefited from it. Chamberlin’s work as an activist and community leader was centered on human and civil rights, and the power to make choices rather than having choices imposed by others. Her work created room for a diversity of experiences and beliefs, all rooted in respecting individuals as they were, rather than as others might want them to be.

Her belief that patients should remain in control of their own recovery wasn’t just about how people should manage mental illness. She was also interested in larger social supports and structures, like the ability to find housing, education, and work, which she saw as central components of human rights. Perhaps unsurprisingly, ultimately that led her to collaboration with disability advocacy groups that focused on issues wider than mental health. By the 1990s, she was working with groups like the American Association of People with Disabilities, finding solidarity in people with common goals of autonomy and liberation. This more holistic view is reflected in the approaches of many contemporary disability rights organizations, including ADAPT, which fights for home and community based services to empower disabled people to live in their communities and take charge of their lives.

She is remembered as a fierce woman who was unafraid to speak truth to power, and as someone who was also fun to be around; she had a deeply humorous streak and was beloved by many in her community. Her dedication to taking control of her care as human, consumer, and patient didn’t stop with mental health, either: She fought ferociously for the right to die at home, which she did, surrounded by loved ones.

”The public’s aversion to people who are different is not sufficient reason to justify locking them up.,” Chamberlin wrote in On Our Own. I couldn’t agree more, and I’m deeply grateful for the groundbreaking work she did to empower the mental health community. Without her efforts, my own life as a mentally ill person would likely be quite different; my ability to access mental health services on my own terms might be much more challenging than it already is without the work of advocates who fought so bitterly for autonomy. We still have a long way to go when it comes to acknowledging the rights of mentally ill people — whether we call ourselves people with mental health conditions, psychiatric survivors, consumers, or by other names — but people like Chamberlin laid the groundwork for our freedom.


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.

Disabled People are Missing from Conversations on Campus Sexual Assault

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Last month, the National Council on Disability released “Not on the Radar,” a comprehensive report about campus sexual assault and the disability community. It reveals extensive failures on this issue, from accessibility barriers at rape crisis services to the exclusion of disability status from data collection projects. The most stark finding was that one in three disabled undergraduate women on campus has experienced sexual assault — and this leaves out data about people of other genders, graduate students, faculty, and staff.

The increased risk of sexual assault in the disability community is a documented issue, so while this number is bleak, it is, unfortunately, not very surprising. What’s chilling, says Ana Torres-Davis, an attorney advisor with the NCD, was “realizing that the federal government had left students with disabilities out of very large research projects.” Federal data collection doesn’t require it, many campus climate surveys don’t include it, and other research hasn’t delved into the issue. “We were invisible,” she added, even after the Obama Administration pushed to reduce campus sexual violence.

That invisibility may in part explain the profound access issues with campus crisis services documented in the report. Torres-Davis noted that campuses are getting better about basic physical accessibility, including ramps, elevators, and other means for people with mobility disabilities, though they aren’t perfect. Activist Andrea Pino, who cofounded End Rape on Campus, notes that especially on older campuses, colleges dodge accessibility requirements with claims that their buildings are historic.

When campus crisis services are physically inaccessible, that’s a huge barrier to reporting. So is failing to provide competent ASL interpretation services. Some D/deaf and hard of hearing students reported having to write notes back and forth to a crisis counselor, or wait days over the weekend for the college to secure an interpreter. Blind and low vision students, those with cognitive, intellectual, or developmental disabilities, and mentally ill students, among others can encounter other access barriers. This can lead to underreporting of rape; in some cases students may be unable to report, even when they want to.

These issues are exacerbated by the fact that campus disability services often exists in a silo. The NCD report found that interoffice collaborations to improve accessibility and include disability in sexual assault prevention were profoundly lacking. As Torres-Davis put it, “they never thought about it.” Thus, even the most active and supportive of disability services offices couldn’t counteract, for example, a Title IX office up a flight of stairs that provides no information or support about disability and sexual assault.

Title IX offices are responsible for fulfilling responsibilities under an eponymous amendment to the Higher Education Act. This amendment prohibits discrimination upon the basis of sex. Historically, it’s been used by female athletes to fight disparities between women’s and men’s teams, but it’s also used by sexual assault and harassment activists to force their campuses to take their cases seriously.

Katie Rose Guest Pryal, an attorney and sexual assault advocate, identifies another issue: Rape itself can be disabling. Rape survivors are at extremely high risk of developing PTSD, and Pino works with students who experience anxiety, depression, and the exacerbation of existing mental illnesses or other disabilities in the aftermath of rape.

Pino made national headlines for her leveraging of Title IX to force the University of North Carolina, Chapel Hill to take action on her assault. The part of the story that’s less publicized is that ultimately, the Department of Education also opened a separate Title II complaint, referencing Title II of the Americans with Disabilities Act in a finding that her case included disability discrimination, too, on the basis of how her assault affected her mental health. This is, she says, extremely common, and suggests that leveraging Title II and the ADA, along with Section 504 of the Rehabilitation Act of 1973, which also bars disability-based discrimination would be a powerful way to fight campus rape.

Pino says many campuses are focused on protecting their legal concerns when it comes to campus sexual assault, but that there are other models of handling both prevention and claims. Retention-based models, for example, are geared towards helping students stay in school through a combination of accommodations, counseling, and student-centered justice. These models can be highly effective, radically reducing the risk that survivors will drop out.

“I think universities are doing all right with accommodating people who come in knowing that they have rights. These students are better equipped to navigate the Title II process,” Pino remarks. Disabled people who have spent their lives fighting to survive are certainly experienced with bureaucracy and leveraging the law. But newly-disabled rape survivors, or disabled people who weren’t connected with the disability rights movement and their legal rights prior to college, are at a profound disadvantage. Learning your rights as a disabled person while also dealing with the aftermath of sexual assault is a formidable challenge.

While taking action on these issues can include lawsuits, prevention of the incidents that lead to lawsuits in the first place should be foremost on our minds. The National Council on Disability study includes a number of recommendations, such as adding disability to data requirements, requiring the inclusion of disability in reporting, clarifying some legislation, and improving cross-campus collaboration on disability awareness and accessibility.

That doesn’t leave others helpless. Individual states can and should pass legislation addressing campus rape, but students can also have a profound impact. Torres-Davis encourages students to contact campus Title IX offices to ask about disability inclusion, and she says that if students are asked to complete campus climate surveys that don’t ask about disability, they should raise complaints. Similarly, people organizing campus events should actively include disability, and reach out to campus disability services and activists to enrich their rape prevention programs.

Disabled students are a vital and thriving part of campus life, and they shouldn’t be relegated to the margins. Nondisabled people can make a point of connecting with the disability community and ensuring that all campus services are accessible. That, in turn, can help to turn the tide on the one in three statistic identified by the NCD.

If you have experienced sexual assault on campus, you can contact RAINN or End Rape On Campus

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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

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

We Cannot Ignore the Connection Between Disability and Intimate Partner Abuse

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This blog post is part of a series in partnership with the Disability Visibility Project® to bring attention to the omission of disability from larger conversations taking place within the #MeToo Movement.

Trigger warning: this post discusses abuse, violence, and mental illness.

Disabled people are at a higher risk of violence than nondisabled people, and yet they’re often left out of conversations about the epidemic of intimate partner violence in the United States. The collective failure on the part of society, advocacy organizations, and law enforcement to recognize this issue — and the unique factors involved in abusive relationships for disabled people — makes it much more challenging to take action.

Disabled people in general are often left behind by activism and awareness campaigns, a reminder that some people view disability as something separate and isolated from society. Moreover, when conversations do include disability, they often involve nondisabled people speaking for the disability community. The assumption that disabled people don’t date, have relationships, or marry can play a minimizing role, as people assume intimate partner violence doesn’t affect the disability community — or that it only involves disabled women, and is only committed by men.

The silence on intimate partner violence and disability isn’t just a disservice to people experiencing or recovering from abusive relationships. It also makes disabled people an easy target, especially when they sit at the intersection of multiple identities. Robin Eames, an Australian disability activist and writer, is acutely aware of this. They experienced it firsthand with a former abusive partner: “He consistently targeted young autistic people who were either questioning their gender/sexuality or were in the early stages of transitioning.”

For disabled people, intimate partner violence doesn’t always take familiar forms

When people think about intimate partner violence, they may think in stereotypes: A screaming man, hitting, throwing things, threatening people. Men, of course, are not the only ones who are abusive, and violence can take place without a single blow, but relationships sitting outside the stereotypes often fly under the radar. For LGBQT disabled people, for example, attitudes about their gender and sexuality can further hinder access to justice. Abuse in the context of LGBQT relationships is often a taboo topic, and myths that abuse doesn’t happen in the context of LGBQT relationships are common. These myths also extend to abusers, with a cultural attitude that disabled people cannot themselves be abusive.

Physical and verbal violence can be present in relationships where disability is involved, but it also takes more nuanced, complicated forms that might not be immediately readable to outsiders in the relationship. In fact, sometimes abuse even appears to be caring, or the work of a dedicated, loving partner. And emotional abuse in disability contexts can look very different than it does in nondisabled relationships.

Eames and Karin Willison had partners who lived in their homes rent-free and took advantage of them, but still presented themselves as loving care providers. Abusers may make their targets feel like “burdens” while maintaining an outward appearance of being caring and loving; martyrs to their “needy and controlling” partners. That intersection of abuser and care provider can make a relationship difficult to escape, especially when it includes financial abuse like draining bank accounts and seizing benefits checks.

“The lack of freedom of movement was really stifling and it made it hard to have my own friends and my own life,” says Eames. That experience was echoed by Jack, who was trapped in their abusive partner’s apartment for hours or even days at a time because the building wasn’t wheelchair accessible. Trapping people at home, as Ivy Marks’ partner also did, limits their ability to socialize, interact with people, see healthy relationships, and ask for help.

And for disabled people who can’t work, their inability to work can become a point of abuse in relationships as well. Abusive partners characterize their targets as “lazy” or imply that they’re doing all the work, expressing resentment about doctor’s appointments and other needs. Cassandra J. Perry’s partner once accused her of “playing the disability card,” expressing irritation with her disability-related limitations.

There are other direct intersections with disability that can obscure abuse — some people, for example, are more prone to cuts, bruises, and joint dislocations. Partners who are aware of this may exploit it, as Eames’ partner and Marks’ both did. Health care providers who aren’t looking for abuse may accept something like “they fell down” as an excuse.

Perry also commented that her abuser took advantage of the fact that some of her medications altered her level of consciousness. She woke more than once to her partner “climbing on top of me” despite her cries to stop — and these incidents raise troubling questions about how many times she was raped in her sleep.

Abusers may also engage in tactics like moving, hiding, or discarding medications, mobility aids, and other needed disability supplies. Marks’ partner interfered with her medications as well, in addition to placing objects in her way and trapping her with boxes so she couldn’t leave rooms.

For mentally ill people, a history of mental and/or chronic illness can become a weapon. “He also used my depression and other mental health issues to help convince me I was worthless and everyone hated me, so I had to depend solely on him,” Rachel Tanner told Rooted in Rights. “One commonality in many invisible chronic illnesses is healthcare professionals (and the general public) making us feel like we’re not actually sick and we’re making up the whole thing. My ex capitalized on that and often told me I wasn’t actually sick.”

Agnieszka K.’s partner was also mentally ill, and he used this against her, attempting to blame their relationship problems on their mutual mental illnesses. When she finally filed for a restraining order, he attempted to suggest that she was “misinterpreting” their relationship. This tactic draws upon stereotypes about mentally ill women, who are often treated as dramatic, unreliable, and prone to falsehood.

“Because there’s a lot in life that I as an autistic person get told is ‘normal’ and that I’m expected to try and do even though it’s uncomfortable or sometimes downright distressing, it didn’t ring any bells that things in an intimate relationship were also making me feel anxious, weird and distressed,” says Lisa. Their experience echoes that of many other autistics; when you spend your whole life being told you’re socially inept and just have to try harder, how are you supposed to differentiate “okay” from “not okay”?

B. Hypatia, who is also autistic, commented that: “I stayed for years because honestly, I was socially awkward and it was pretty easy to believe him that nobody would ever be my friend for real.” Her abuser, as in many other cases, preyed on her disability status to isolate and marginalize her. And, like many autistics, she met her partner and socialized heavily online, in a world where online relationships are often treated as lesser. That made it harder for her to recognize the patterns of abuse, surrounded by messaging that online relationships “don’t count.” Meanwhile, Marks notes that these online connections became a lifeline — interacting with the online disability community in particular became critically important for identifying her relationship as abusive.

A history of abuse — an issue for many disabled people — can also contribute to repeated patterns of abuse. A., who was in an abusive relationship for seven years, said abuse in their past made it harder for them to recognize what was happening. Eames noted the same, while Perry described control as “a familiar feeling” that made it easier to slide into another abusive relationship. People around them had concerns about their relationships, but didn’t speak up until long after the fact.

Access barriers limit options for disabled people

Disabled people trying to escape abusive situations face the same access problems nondisabled people do, including threats, coercion, and limited finances that make it difficult to manage logistics. But disabled people are more likely to be low-income — and much more likely to experience economic abuse, which makes it even more difficult to escape.

But for disabled people who do get out and manage to seek help, there’s another access barrier in place, and it’s sometimes a physical one. Many resource centers are physically inaccessible, and also lack interpreters for D/deaf and hard of hearing clients. Others may meet guidelines on accessibility, but fail to provide emotional and social support targeted to disabled people. This goes for law enforcement as well.

I want attorneys and law enforcement to understand that abuse of people with disabilities (or anyone) often doesn’t involve visible injuries. I recently learned about the concept of coercive control, and even now, many years later, it helped me understand how I ended up in an abusive relationship and why I stayed so long,” says Willison. Marks recounts an interaction with police officers in which they interrogated her about her relationship and didn’t recognize the events she was describing — like being denied access to the restroom — as abuse. The people she went to for help, as is often the case in these situations, let her down.

Tackling the problem of disability and abuse to break the cycle

As with so many issues in the disability community, there is actually some good news about this problem: By naming it, defining it, and talking about it, we can demonstrate that this is a resolvable issue. Taking action on disability and domestic violence should include having lots of very public conversations about this issue, backed by serious, thoughtful research and data collection to better understand the scope of the problem. This should include a close look at the types of abuses that come up in disability settings.

But for those dealing with violence now, research isn’t enough. Action includes educating organizations, including law enforcement, that work on these issues about their legal obligations with respect to accommodations. It also includes leading workshops and trainings to help people understand the unmet needs of the disability community — and making sure disabled people are in leadership roles throughout such organizations in addition to working as social workers, counselors, and other support staff.

Perry explains that it was only persistence that connected her with programs to help her live independently, not staff at intimate partner violence organizations, highlighting an obvious and easily repaired gap in services. “It’s the existence of these programs and agencies, the knowledge that they exist, and the ability to self-advocate to secure these services, that has and is providing me with the ability to continue to live on my own as a self-sufficient, independent person. Without them, I’d be relying on a relationship in order to survive.”

For those who can’t engage in education and trainings, there are other options for intervention. These include advocating with local officials and providing support to activists, like researching disability inclusion in other areas and developing plans for doing the same locally.

It took decades for activists to move the bar on how intimate partner violence is treated culturally and within the legal system. Along the way, many left the disability community out through the creation of access barriers, silence on disability issues, and disinterest in engaging with disabled activists. This is an opportunity for the next generation of activists to move towards repairing that harm, working in collaboration with disabled people to ensure that everyone can feel safe at home — and that for those who are unsafe, options are available.

If you or someone you know is experiencing intimate partner violence, you can contact the National Domestic Violence Hotline (1-800-799-7233/TTY 1-800-787-3224), Deaf DAWN, and Abused Deaf Women’s Advocacy Services.

Some names in this post have been changed.

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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

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