s.e. smith | Vox Our world has too much noise and too little context. Vox helps you understand what matters. 2019-11-05T20:42:50+00:00 https://www.vox.com/authors/s-e-smith/rss https://platform.vox.com/wp-content/uploads/sites/2/2024/08/vox_logo_rss_light_mode.png?w=150&h=100&crop=1 s.e. smith <![CDATA[He needed a gender-affirming procedure. The hospital said no.]]> https://www.vox.com/the-highlight/2019/10/25/20929539/catholic-hospitals-religious-refusal-rural-health-care-evan-minton 2019-11-05T15:42:50-05:00 2019-11-01T09:30:07-04:00
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In the summer of 2016, Evan Minton was preparing for his scheduled hysterectomy at Mercy San Juan Medical Center in Carmichael, California, just outside Sacramento. The procedure, part of his gender-affirming care, should have been routine. 

But the day before, the hospital abruptly canceled his surgery; the hospital was Catholic, and a procedure that results in sterilization is a violation of the Ethical and Religious Directives that, with rare exceptions, govern Catholic hospitals. Minton had experienced what’s known as “religious refusal,” a growing — and divisive — phenomenon in which health care is denied on the basis of religious beliefs.

Catholic facilities argue that the directives are protected under religious liberty laws. Minton, who was unavailable for comment, felt he’d been denied care on the basis of his gender identity, making it a civil rights issue, and in September, a court agreed to let him continue a lawsuit against Dignity Health, which operated the hospital where he was denied care. (It later referred him to a Methodist facility in the same chain that performed his surgery.)

Minton’s fight for health care is the latest in a growing list of court battles over religious liberty and civil rights; the Supreme Court just heard a trio of cases about whether firing people on the basis of gender identity or sexual orientation is acceptable, and last year ruled in the Masterpiece Cakeshop case, which revolved around whether a Christian baker could refuse service to a gay couple requesting a wedding cake. 

When it comes to health care, the stakes are life and death, an issue that the California court in Minton’s case recognized when identifying the need for “full and equal access to medical treatment.”

“I want it to end with me,” Minton told a local NBC affiliate; he has since received much of the gender-affirming care he needs.

Dignity Health, which has since merged with Catholic Health Initiatives to form CommonSpirit Health, told the Los Angeles Times that its hospitals “do not perform sterilizing procedures such as hysterectomies for any patient regardless of their gender identity, unless there is a serious threat to the life or health of the patient.”

When patients go to the doctor, they expect treatment rooted in the latest medical advancements, not interpretations of the Bible. But as medical facilities continue to close or merge with better-funded institutions, Christian hospitals, which may hew to religious doctrine when making treatment decisions, are becoming a lone source of care for many Americans.

Paired with a presidential administration that is actively working to protect faith-based exemptions to anti-discrimination laws, it’s changing the landscape of health care in America. The Ethical and Religious Directives, for example, severely limit access to reproductive health care, including abortion, contraceptives, sterilization, and in-vitro fertilization (IVF). Care providers may even be barred from offering referrals or discussing issues like contraception. (The US Conference of Catholic Bishops, which develops this guidance, did not respond to a request for comment.) 

The implications here are clear for patients like Minton, but the Ethical and Religious Directives also frown on fertility treatment. When former California resident Michelle, 37, and her husband, Josh, 42, learned that something had gone wrong in the early stages of her IVF pregnancy, they were advised to terminate. But when she went to the doctor’s office, the couple alleges, the doctor grumbled about the paperwork needed to get authorization from the Catholic facility for the medically necessary shot of methotrexate, which would have stopped the cells from growing. (Michelle’s then-physician and affiliated hospital did not respond to a request for comment.)

Michelle says the doctor told her, “What did you expect, getting someone pregnant who shouldn’t be?” The couple, who asked that their last names be withheld for privacy reasons, say they felt like an unwelcome burden. They sought treatment elsewhere, but by that time she required general anesthesia and a surgical procedure, which came with increased risks including infection, infertility, and even death. The memory haunts Michelle, preventing her and her husband from “emotionally being able to move forward with our remaining frozen embryo,” she says. They fear a repeat denial of care if something goes wrong with another pregnancy.

Like Evan or Michelle and Josh, patients at Christian hospitals may not even be aware which services will ultimately be denied; at Catholic facilities, the directives provide some guidance, but at Baptist, Adventist, and other religious facilities, no unified set of rules is available for patients to review. “I think they think [religious refusals] happen to certain people going in just for an abortion,” says Ian Smith, a staff attorney at Americans United for Separation of Church and State, underscoring how ignorance of these rules can affect patients who need all manner of care, such as hormone therapy, fertility treatment, gender-affirming care, or tubal ligations. 

Catholic entities currently make up three of the top six largest health care chains; 17 percent of the hospital beds in America are in Catholic facilities, which are growing more rapidly than those of other religious sects and most other hospital chains, especially in rural areas. In states such as Alaska, Washington, and Iowa, more than 40 percent of beds are controlled by Catholic facilities and patients who need help may find that Catholic providers are the only option.

For the 14 to 20 percent of Americans who live in the rural US, it is a particularly acute problem. As rural hospitals continue to close — since 2010, 113 rural hospitals have closed, many in states that refused Medicaid expansion — the Catholic health care industry flourishes, snapping up struggling rural facilities in mergers and narrowing access to care. Between 2005 and 2016, there were 380 rural hospital mergers across the United States, some of which were religiously affiliated. 

In the case of Dignity, which merged with Catholic Health Initiatives last year, Chad Burns, a communications manager at Dignity Health, told Vox via email that “the religious affiliation of our rural hospitals and the services they offer have not changed as a result of this alignment.”

Other religious hospitals — including Baptist and Adventist — account for 4 percent of the overall hospital market. They, too, may deny care or recommend options that do not match the latest medical practices in accordance with religious beliefs rather than evidence-based medicine. 

Sociologist Lori Freedman, who works at the University of California San Francisco, says tracking how often religious refusals occur is notoriously difficult, illustrating how difficult it is for patients to get information needed to make health care choices. Nor is there data on the number of providers who are barred from performing procedures and instead offer referrals. “There’s no paper trail,” she says, with cases only bubbling to the surface when they are “particularly egregious.”

Researcher Lois Uttley of Community Catalyst, a health care advocacy organization, has identified nearly 50 Catholic institutions that are the sole community hospitals: They are at least 35 miles or 45 minutes away from the next hospital. In an emergency, that can be extremely dangerous, especially since some rural areas are extremely remote. Michelle and Josh were able to locate relatively nearby alternate care in Southern California. A pregnant person experiencing a miscarriage in rural Alaska might be looking at hours of travel if a hospital refuses to offer miscarriage care, which researchers say they increasingly do. 

Physicians with privileges at these facilities must abide by the directives even if they are not Catholic, and the same extends to secular providers leasing space from Catholic entities. In a 2018 update, the Ethical and Religious Directives suggested it could also apply to hospitals acquired through merger and affiliation, ringing an alarm for advocacy groups. 

The legal issues at hand are complex, notes Smith, the lawyer with Americans United for Separation of Church and State. It might seem like an obvious violation for hospitals to accept government money and engage in religious discrimination. But in court, it may be a challenging case because these hospitals are considered private institutions. 

But when religious hospitals affiliate with or acquire entities receiving government funds, like public university teaching hospitals or publicly funded community hospitals, the story is slightly different. These issues became sticking points in a proposed collaboration between the University of California, a public entity, and the Catholic Dignity Health chain — the very one that refused to treat Evan Minton — which care providers and communities vigorously and successfully opposed, fearing religious imposition. In 2013, a similar partnership in Texas attracted the attention of Smith’s organization, with local officials altering their original plan to satisfy concerns about spending taxpayer dollars on institutions that were free to deny health care. 

The stakes of religious refusal are especially big for people like Michelle. They get a lot more challenging when patients live in isolated rural areas where simply going to another hospital, as she did when she was forced to receive care at a more distant facility, is not possible. 

An illustration of a pregnant person in front of a church and hospital.

Freedman, the sociologist, tells the story of a doctor who was reprimanded by a religious hospital for inducing labor in a patient with ruptured amniotic membranes and a severe fetal anomaly. “We live in a rural area,” the doctor said. “Should I tell them to just keep driving for another hour and a half?”

For Freedman, the story illustrated frustrations for care providers: “[Mandates to turn patients away] strike me as something that must be on people’s minds when they work in these remote areas.” In some parts of the US, where “the presence of Catholic health care has become normalized,” patients can waste precious time racing to a hospital that won’t serve them.

“It seems so incomprehensible to me that you can impose on somebody else’s existence in that way,” Josh says of his experience. Many patients find out about discriminatory elements of the health care system when it happens to them, and as Josh notes, it is never just the patient who needs medical treatment who is affected. Their ordeal was traumatic for him, and the loved ones of other patients experiencing religious refusals are similarly affected in a ripple effect that undermines trust in doctors. 

Catholic hospitals aren’t the only source of religious refusals. The Trump administration has fought hard to expand the right of religious refusal via rulemaking, including through the creation of the Office of Conscience and Religious Freedom within the Department of Health and Human Services. The agency’s accompanying rule would make it much easier for providers, from front-desk receptionists to surgeons, to refuse patient care, whether or not they are in a religious facility, and has been subject to multiple lawsuits. The expansion of such rulemaking could hit rural communities particularly hard, increasing the risk that patients denied care at one facility may have to travel substantially farther to another, possibly to receive the same treatment. 

“If you turn somebody away and they end up dying, or the baby ends up dying because they’re not able to get treatment, what are the ramifications for the hospital?” asks Amy Chen, a senior attorney at the National Health Law Program. The rise in Catholic mergers is making this a more pressing question for pregnant people, people who don’t want to get pregnant, and members of the LGBTQ community who can be caught up in such policies. 

Michelle’s experience has forever changed the way she interacts with doctors: Her first question for new care providers is whether they are affiliated with a religious health care entity and if they can offer a whole spectrum of reproductive health services.

And, she notes, if her employer-provided insurance coverage changes, she may not have a choice between the religiously affiliated and secular hospitals in her community. What about the hospital in the next town over where she might seek care if her insurance no longer covered visits to the hospital she uses now?

It’s Catholic. 

s.e. smith is a Northern California-based writer and journalist who has appeared in the Guardian, the Nation, Esquire, Rolling Stone, In These Times, and Bitch Magazine.

]]> s.e. smith <![CDATA[Not one 2020 candidate has a website that is accessible to the blind]]> https://www.vox.com/first-person/2019/6/26/18759522/2020-candidates-disability-issues-blind-accessible 2019-06-26T16:30:00-04:00 2019-06-26T12:00:00-04:00
The 2020 candidates need to priority website accessibility for disabled people. | Shutterstock

The growing list of presidential candidates has something in common beyond their Oval Office aspirations: None of them think disabled people should be able to access their websites. 

On Tuesday, a day before the first Democratic debates, every presidential candidate (including the Republican one) was called out by the Miami Lighthouse for the Blind and Visually Impaired for having an inaccessible campaign site, just months after Politico put the candidates on blast for shoddy Spanish translation sites. Blind and low-vision users, along with disabled people who have certain other impairments like seizure disorders and cognitive disabilities — as well as those who are deaf and hard of hearing — can’t actually use the candidates’ websites. It’s just the first in a series of obstacles disabled communities face when trying to make informed voting decisions, even though these groups have an especially vested interest in politics. 

Thirty-five million eligible voters are disabled, and disability turnout lags behind that of nondisabled voters by 6 percentage points; if disabled people voted at the same rate as their nondisabled counterparts, there would be 2.2 million more voters. One of the reasons is that voting is extra difficult for disabled people. Inaccessibility of polling places and election materials is a factor, as are voter suppression tactics — disabled people are less likely to have state identifications, for example, and get caught in voter ID laws. 

Yet even though we show up to vote, many campaigns historically have failed to engage with our community. The 2020 candidates’ campaign sites highlight this issue. “Political campaigns have a long way to go to meaningfully engage with disabled voters when something so basic as a website poses a major barrier. Not a great look for any candidate talking about inequality, diversity, and inclusion,” notes Alice Wong, the founder and director of the Disability Visibility Project and one of the co-partners behind #CripTheVote.

When people think of website accessibility, they should consider blind and low-vision users first. Accessible websites have features like alternate text on images so people who can’t see them have context, high-contrast text, the ability to resize text as needed, and clearly labeled navigation elements. But sites should also have captioned and transcribed videos, and should be laid out thoughtfully for the benefit of people with cognitive impairments; website design should definitely not, for example, make visitors vomit, as happened to me with one campaign site’s strange animation effects. They should use clear, plain language for people with intellectual, cognitive, and developmental disabilities. 

Virginia Jacko, CEO of Miami Lighthouse for the Blind, an organization that provides services to promote independence for blind and low-vision people of all ages, spearheaded the user testing for the 2020 candidates’ sites. The study was conducted by an entirely blind technical staff (Jacko is also blind). 

Testers found significant errors that made it difficult or impossible to engage with the candidates’ websites. “I was surprised because not a single candidate — either the people who are going to be here for the debate or the Republican candidate — not a single one had an accessible website,” said Jacko. They argue that this is a violation of the Americans With Disabilities Act, though disability rights attorneys I spoke to note that the law behind the ADA and websites is complicated, and this may not be an argument provable in court. 

Former Vice President Joe Biden, Sen. Kirsten Gillibrand, Rep. Tulsi Gabbard, and former Rep. John Delaney had websites with the fewest errors, while Sens. Bernie Sanders and Elizabeth Warren, along with Mayor Pete Buttigieg, came in last in the assessment. Lighthouse for the Blind told me the Andrew Yang and Warren campaigns have both reached out to discuss design improvements since the study was released.

It’s a surprising outcome as Sanders, Warren, and Buttigieg have so far been best on disability issues. Sanders has the most robust set of policies of the candidates and just recently commemorated the 20th anniversary of Olmstead v. L.C., a key disability civil rights case involving two intellectually disabled women who sued for their right to live in the community and won. Similarly, Warren made a note of the anniversary on Twitter, while Buttigieg was the first candidate to hire an out disabled staffer, though neither has outlined official policies. 

“All of the platitudes, mentions, or policy statements about disability issues by candidates ring hollow when potential disabled voters can’t even access their websites,” says Wong.

On any of the candidates’ websites, the Lighthouse for the Blind team couldn’t identify a single accessibility statement to provide a commitment to accessibility or information about how to request assistance. This is unlike, say, the NFL, which includes a detailed discussion of accessibility for visitors, though it lacks a contact phone number (Vox’s website also doesn’t have one).

“When you can’t access basic campaign information, you can’t make informed decisions. You’re being shut out of the voting process,” said Emily Ladau, editor-in-chief at the disability-focused publication Rooted in Rights and creator of the #InaccessibilityMeans hashtag. 

During the 2016 election, the disability community often expressed frustration with candidates’ lack of engagement with its issues. “I want a candidate who genuinely respects the disability community,” Ladau commented. 

But in 2020, some disability issues are coming to the fore, even if they aren’t being explicitly approached as such. Any conversation about Medicare-for-all (whatever flavor a candidate is promoting) ends up touching on disability, as disabled people are frequent and heavy users of the health care system. Sens. Kamala Harris, Cory Booker, and Kirsten Gillibrand have all joined Sanders’s Medicare-for-All Act, for example, while candidates like Beto O’Rourke and Buttigieg support a version that retains employer health insurance as an option, and Sens. Amy Klobuchar and Michael Bennet have stuck with more conservative buy-in approaches.  

Opioids are a disability rights issue too, in how crackdowns might affect chronic pain patients or how to provide access to effective and supportive treatment for people with substance use disorders. Mental health — explicitly name-checked by several candidates including Delaney and Klobuchar as a priority — is another disability issue. 

While nondisabled people may not think of it this way, immigration, transportation, reproductive rights, affordable housing, employment nondiscrimination, LGBTQ rights, racial injustice, and criminal justice reform are also disability issues. The disability community is disproportionately represented in marginalized groups — many of those seeking refuge at the border are disabled, with impairments like PTSD, depression, and anxiety caused by enduring trauma, along with acquired disabilities from living in war zones. Incarcerated people are much more likely to be disabled, and many of the black, Latinx, and indigenous people being shot and killed by police are also disabled. 

The disability community has an outsize stake in the social issues many candidates are discussing in the debates, but those who want to read more about the candidates’ stances, or donate, may have trouble doing so on their websites. 

“I don’t think anybody has ill intent,” said Jacko.

But it’s still a telling sign for disabled voters who are being told that their basic access to information about candidates simply doesn’t matter. Someone should come up with a plan for that. 

Editor’s note: Joe Biden’s campaign also reached out to Lighthouse for the Blind about design improvements.

Writer s.e. smith is a Northern California-based journalist who has appeared in publications like the Guardian, Bitch Magazine, Esquire, Rolling Stone, and Rewire.News, in addition to anthologies including The Feminist Utopia Project and (Don’t) Call Me Crazy.

First Person is Vox’s home for compelling, provocative narrative essays. Do you have a story to share? Read our submission guidelines, and pitch us at firstperson@vox.com.

]]> s.e. smith <![CDATA[Meet the people fighting for health care access for disabled kids detained at the border]]> https://www.vox.com/first-person/2019/6/26/18716078/concentration-camps-border-detention-kids-immigrants-disability 2019-06-25T18:18:47-04:00 2019-06-26T08:30:00-04:00
A border fence is seen near the Rio Grande which marks the boundary between Mexico and the United States in February, 2019 in Eagle Pass, Texas. | Joe Raedle/Getty Images

Horrific conditions at a Clint, Texas, Border Patrol facility came to light last week when attorneys visiting the site described unaccompanied children babysitting each other, premature infants without adequate care, and other horrendous circumstances, which Representative Alexandria Ocasio-Cortez sharply described as “concentration camps.” 

While numerous human rights and civil liberties groups — including RAICES, the ACLU, the Civil Rights Education and Enforcement Center, and the Young Center for Immigrant Children’s Rights — are working at the border to document and fight conditions in these facilities, one type of group that’s been involved may be a surprise to some: Disability rights organizations.

Some of these organizations have a secret weapon in the form of a legal mandate that allows them to demand access to facilities that others, such as members of Congress, may struggle to get into. It’s the harsh conditions of detention centers at the border that allow many disability advocacy groups to qualify for access and join the fight for changes that can benefit both disabled and non-disabled immigrants. 

“The intersection of disability and immigration is just one of the intersections that’s really important to look at, especially right now,” said Richard Diaz, who works with Disability Rights California, the state’s protection and advocacy organization. P&As are found across every state and US territory, with a mandate to defend the personal and civil rights of the disability community. When it came to the decision to get active in immigration detention facilities, “we had the responsibility to help people in these centers, just as we have the responsibility to help people with disabilities anywhere in California.”

Disability rights groups have accelerated their involvement in immigration detention in recent years. In its role as a P&A, Disability Rights California is entitled to demand access to state and private facilities if it has concerns about the wellbeing of disabled people housed there. So does Disability Rights Texas, which inspected shelters in 2018 to determine if disabled children were being housed there and whether they were receiving adequate care. Similarly, Disability Rights Florida evaluated and reported on the Homestead temporary shelter, a tent camp housing 1,350 children.

While P&A representatives cannot demand entry to federally owned and operated facilities, their scope is quite broad — and urgent. ACLU attorney Claudia Center noted that the physical and emotional trauma people are fleeing and enduring on their way to the US and in detention makes huge numbers of immigration detainees members of the disability community, at least temporarily. Mental health issues associated with stress and trauma like anxiety, depression, and post-traumatic stress disorder are common in immigration detention facilities, and can be covered under disability law if the condition includes disabling symptoms.

“People who are in detention, who are seeking asylum or refugee status or have experienced border crossings, are fleeing violence and threat. Almost by definition, these are people with disabilities … because of everything they have gone through,” Center said.

And any disabled people in immigration detention, whether they have PTSD or use a wheelchair for mobility — and whether in facilities operated by ICE, Border Patrol, or a local jail under contract — are covered by the Rehabilitation Act of 1973, meaning they’re entitled to accommodations. This includes physically accessible facilities, interpreters for deaf detainees, and materials accessible to blind and low-vision people, said Center. It also includes rights like being accompanied to immigration hearings and interviews, receiving legal representation when they cannot represent themselves, or taking breaks during testimony. Many of these accommodations are not provided, making them clear violations of the Rehabilitation Act.

Diaz explained that this also means the right to a least-restrictive environment, something every disabled person in the United States is entitled to; people should live in their communities, and if there is a compelling reason this is not an option, in settings that are as open and free as possible. Yet, he says, that’s not what Disability Rights California has seen in the detention facilities it reviewed, like the Adelanto Detention Facility in San Bernardino, California. Instead, disabled detainees are sometimes moved to administrative or disciplinary segregation, both of which involve being confined to cells for hours a day: 23 hours or more in disciplinary and 20-plus hours in administrative segregation. 

When people with poorly managed mental health states are put in these conditions, the result can be rapid decline. The organization observed evidence of and took reports about self-harm and suicide attempts among people trapped in segregation, finding that GEO Group, the private administrator of the prison, does not track such incidents adequately. 

This legal responsibility can become a framework for disability advocacy groups to fight harmful conditions in detention facilities. And these actions will benefit not just disabled detainees, but everyone. 

Groups focusing on disability issues aren’t the only ones looking out for disabled people in detention. Holly Cooper, co-director of the Immigration Law Clinic at University of California Davis, frequently encounters disability issues among the young people she works with, and they have become a large part of her work.

In addition to being one of the attorneys involved in the recent groundbreaking report, she’s part of a class action lawsuit, Lucas R. v. Azar, which among other things is challenging the inappropriate use of psychiatric medication in immigrant children who are being given psychotropic drugs without the consent or involvement of their parents. The children involved in the suit were given such medications in response to mental distress caused by being in detention, such as anxiety or depression, even with family members eager to provide them with loving homes where they could begin to recover from their ordeals. 

These medications can have severe effects, some of which are permanent; for example, some antipsychotics cause tardive dyskinesia, repetitive involuntary movements like lip smacking, twitching, and grunting, some of which are irreversible in some patients. Other drugs can cause damage to the liver or kidneys and other severe reactions, especially in children, as no testing has determined safe and effective doses. Forcible medication for people with mental health conditions has been a long fight for the disability community. So has the use of psychoactive medications for behavioral control, not therapeutic, purposes, as in the case of foster children receiving high doses of psychiatric medications.

The administration of medication without consent reflects a larger issue: very limited access to health care and very little autonomy and privacy for those who need it. Cooper said medications are routinely confiscated at the border, noting that this can be extremely dangerous. For example, a teenage mother with a premature infant who swam through the Rio Grande after her C-section had her antibiotics seized. For people with chronic illnesses that need medication, including diabetes, seizures, HIV/AIDS, and some mental health conditions, interruptions can be disruptive or even fatal. 

Once in facilities, people can struggle to access all but the crudest of care, said Diaz. “I saw a child with a bullet still lodged in his arm, he was in 10/10 pain and it hadn’t been treated,” says Cooper. While Cooper gets calls from parents frantic about disabled children lost in the system, her work also includes unaccompanied minors, the children with no parents ensnared in a system that effectively criminalizes immigration.

The leveraging of disability law, P&As, and related resources as tools to support immigration detainees has largely flown under the radar, but that’s starting to shift. The disability community is coming to understand the importance of immigration work, while nondisabled people are learning more about the increased incidence of disability in immigration detention. Then there are people deep in immigration work, notes Cooper, who can also start to experience physical and mental health consequences themselves, bringing their work full circle. 

The recognition of the role of trauma in immigration puts the experiences of the thousands of people crossing the border in context, and roots disability advocacy organizations in a large and complicated fight. 

Writer s.e. smith is a Northern California-based journalist who has appeared in publications like the Guardian, Bitch Magazine, Esquire, Rolling Stone, and Rewire.News, in addition to anthologies including The Feminist Utopia Project and (Don’t) Call Me Crazy.

First Person is Vox’s home for compelling, provocative narrative essays. Do you have a story to share? Read our submission guidelines, and pitch us at firstperson@vox.com.

]]> s.e. smith <![CDATA[Disabled people are tired of being a talking point in the abortion debate]]> https://www.vox.com/first-person/2019/5/29/18644320/abortion-ban-2019-selective-abortion-ban-disability 2019-05-29T16:01:02-04:00 2019-05-29T16:10:00-04:00
Abortion opponents hold signs in front of the US Supreme Court in June 2018 in Washington, DC. | Zach Gibson/Getty Images

As the abortion debate reaches a fever pitch across the nation, disabled people are once again being used as a rhetorical device by left and right alike.

Selective abortion bans, bills introduced by anti-abortion lawmakers that forbid abortions on the basis of a fetal diagnosis of disability, and sometimes assigned sex as well, are in the news again this week. On Tuesday, the Supreme Court declined to take up an Indiana selective abortion case that would have banned abortion on the basis of sex, race, or a diagnosis of disability. The news, paired with the release of a lengthy statement from Justice Clarence Thomas describing the risk of “eugenics,” was an acute reminder to disabled people of their frequent role as objects, not people, in this debate.

Selective abortion bans, which are pulled from the playbooks of anti-abortion groups like Americans United for Life, are an old and constant source of frustration for disabled people. These bills employ a sinister disablism that exacerbates the idea of the “justified abortion,” exploiting the 50 percent of Americans who support restricting abortion “under certain circumstances,” even while 29 percent unequivocally support abortion access and 71 percent overall support Roe v. Wade. And these bans are on the rise — according to Rewire.News, 10 states have seen bills related to fetal anomalies introduced in 2019, a marked uptick over recent years.

But bills like these have little to do with protecting disabled people. They are crafted to restrict access to abortion and information about pregnancies, imperiling pregnant people (including, by the way, disabled pregnant people). Using disablism to sneak past an abortion ban or put abortion advocates in an uncomfortable position is a brilliant tactic, and one advocates must not fall for.

Selective abortion bans drive a wedge between doctors and patients

Such bills, which typically prohibit doctors from performing an abortion when they have reason to believe it has been requested because of a diagnosed fetal anomaly or the fetus’s assigned sex, put already vulnerable health care professionals in danger. They reduce the question of access to one of judgment that can interfere with frank discussion and decision-making, or force a delicate dance of plausible deniability so a health care provider can say they didn’t realize why the patient was requesting an abortion.

Some states are also introducing closely related “perinatal hospice” bills, which require physicians to tell patients dealing with a lethal fetal anomaly about the presence of “perinatal hospice” services. These services are not clearly clinically defined but may include medical care to keep the pregnant person as stable as possible, birth planning (whether a still or live birth is expected), and, in the event of a live birth, pain management and other palliative care to keep the infant comfortable prior to death. Such bills pressure and shame patients, and can actually endanger pregnant people by pushing them to carry a high-risk pregnancy to term, something Iowa Republican state Rep. Shannon Lundgren said she supported during a debate over a 20-week ban in 2017.

Like many incrementalist bans, these bills are designed to drive a wedge between patients and providers. Doctors may feel like they cannot recommend prenatal testing or discuss the results in case a patient asks for an abortion. Patients may feel like they can’t ask for testing or counseling. This deprives patients of information they need about their pregnancies, such as pregnancy risks or treatable medical issues in the fetus, and can be extremely dangerous.

These bills are not designed to protect disabled people

Proponents of these bills tend to claim that they are defending “the disabled,” in contrast to those who want to “kill disabled babies.” They may speak of abortion as a choice of convenience, suggesting that when parents face a diagnosis of lethal anomaly, they’ll opt to “get rid of it.”

Some rely on a frequently misinterpreted study from Iceland that purports to demonstrate that prenatal testing has led to a near-total elimination of Down syndrome. It has not. The study looked at pregnancy outcomes in patients who opted for prenatal testing and found a very high incidence (close to 100 percent) of patients decided to request abortions — but some families decline testing, and therefore infants with Down syndrome continue to be born in Iceland.

These bills are also cynically drawing directly on real concerns from the disability community, which has dealt with a long legacy of eugenics. The fear of being eliminated from society is very immediate for communities with congenital, testable disabilities; Down syndrome is a popular example, but it’s also possible to test for many forms of dwarfism, as well as a variety of congenital physical and developmental disabilities.

But there’s little evidence that disability is a driving reason for people to have abortions. While it’s possible to perform some tests as early as the 10th week of pregnancy, more extensive, accurate testing is often only available at closer to 15 or even 20 weeks. Eighty percent of pregnancy terminations take place before 10 weeks and a little more than 5 percent take place after 16 weeks, suggesting that most people make decisions about abortions for reasons other than disability. That’s supported by Guttmacher data that shows that not wanting more children, not being prepared for single parenthood, health concerns, and affordability were all big factors for choosing an abortion. Prenatal diagnoses were not.

The anti-abortion trap of the “justified abortion”

Even as they claim to be concerned about the welfare of the disability community, lawmakers are leveraging disablism to score political points. Their rhetoric is carefully calculated to put abortion proponents in the position of having to defend the seemingly indefensible: choosing to end a pregnancy because of a congenital anomaly. That defense can get particularly fraught with later abortions and arguments that such procedures should be legal, or at least a carve-out should be provided, precisely because something might be wrong with the fetus.

These bans also unwittingly create a dividing line between “justified” abortions and everything else. The use of justification also comes up in calls for exceptions in cases of rape or incest, or in cases where the life of the pregnant person is endangered. Rather than calling in no uncertain terms for abortion on demand and without apology, some are drawn into the traps created by anti-abortion forces; now they’re the people who want to kill disabled babies, instead of the people who believe a private and extremely safe medical procedure should remain personal.

Historically, selective abortion bans have often failed to pass. In at least three states, Kentucky, Indiana, and Ohio, such bills have been blocked in court — but laws in North Dakota (one of the oldest, dating to 2013) and Louisiana still stand, as does a variant on the blocked Ohio bill. As the climate in the United States becomes increasingly hostile to abortion, challenging such bans will be more difficult, which makes their increased incidence very concerning. Five have already been signed into law in 2019, though one was recently blocked.

While near-total bans pass statehouses left and right, we need to pay attention to this insidious “incrementalist” legislation too. Some states are using laws like these to slowly but steadily roll back abortion access, and to lay the groundwork for future legal maneuverings. They’re also counting on this legislation to exacerbate tensions around “justified” abortions. It’s critical to push back on selective abortion bans, and to do so without engaging in the same disablism that abortion opponents are trying to leverage to get them passed in the first place.

s.e. smith is a Northern California-based journalist and writer whose work has appeared in publications like the Guardian, Bitch Magazine, Esquire, Rolling Stone, and Rewire.News, in addition to anthologies including The Feminist Utopia Project and (Don’t) Call Me Crazy.

First Person is Vox’s home for compelling, provocative narrative essays. Do you have a story to share? Read our submission guidelines, and pitch us at firstperson@vox.com.

]]> s.e. smith <![CDATA[Disabled people don’t need so many fancy new gadgets. We just need more ramps.]]> https://www.vox.com/first-person/2019/4/30/18523006/disabled-wheelchair-access-ramps-stair-climbing 2019-05-20T14:18:55-04:00 2019-04-30T07:30:00-04:00
A woman in a wheelchair uses a ramp. | Constantinis/Getty Images/iStockphoto

It feels like every few months, the media becomes infatuated with a new piece of flashy technology peddled to solve a purported disability-related problem.

This is how we get things like “signing gloves” that purport to translate American Sign Language (they do not), expensive portable GPS units for blind people, or high-concept decoder rings that allow blind people to read non-Braille texts. The most recent is a stair-climbing wheelchair, which actually isn’t a new concept.

Typically, the technology is pitched as inspirational, showing us how the presumed tragedy of disability can be ameliorated with something invented by someone who is not disabled. Design students in particular are frequent offenders, like the students who needlessly reinvented the beach wheelchair (did you know that some state beaches have free/low-cost beach wheelchair rentals?) and the tech industry.

Nondisabled people excitedly circulate the new gadget, hailing it as a win for accessibility. Disabled people, meanwhile, roll their eyes at what disability advocate and design strategist Liz Jackson terms a “disability dongle”: “A well intended elegant, yet useless solution to a problem we never knew we had.” Rose Eveleth writes for the Outline that they’re commonly little more than public relations exercises, designed to spur interest in a company and provide it with a goodwill boost — some of them never actually make it to production.

Stair-climbing wheelchairs are an excellent example of the overlapping problems with disability dongles; people with mobility impairments know that there’s a problem (stairs), and they’ve repeatedly articulated solutions. But those solutions are not new gadgets.

The problem here isn’t that most wheelchair users find stairs challenging. Rather, it’s that most built environments rely heavily on stairs, and that while elevators and ramps both exist, many designers choose not to use them.

New gadgets can be unsafe and expensive

There is an inherently segregational nature to new access-oriented technologies like this. It insists on underscoring difference with extremely costly equipment rather than thinking about how to reframe the built environment in a way that welcomes everyone. Anybody can use a ramp, whether they’re disabled or not, such as pushing a stroller or lugging a heavy suitcase. The idea that we should instead prioritize fancy equipment instead is absurd.

Such equipment doesn’t just have an isolating effect. It’s also entirely possible that it is not practical, safe, or functional. Some disability dongles come with high stakes involving people’s mobility and health. Numerous wheelchair users commented that this device requires manual dexterity and core strength that some do not have, while others expressed fear at the thought of actually using such a device, demonstrated without straps or tie-downs. Anyone who has witnessed or personally experienced a particularly enthusiastic Hora at a Jewish wedding is well aware of how terrifying it can be to be lifted aloft in a chair with no safety equipment.

It’s not just impractical and unsafe. It’s also wildly expensive. Breakthrough technology can cost more than a midrange car and most insurers do not cover it. Insurers, including private companies and Medicare/Medicaid, make durable medical equipment (DME) coverage determinations on the basis of demonstrated need, and they are notoriously choosy.

A powerchair without stair-climbing capacity — which must be custom-fit to the user and replaced every three to seven years — can cost $30,000 at a relatively basic configuration, and insurance companies are sometimes reluctant to cover the full cost even when someone has a demonstrated mobility need. A recent story making the rounds revolved around a student who bought an electric chair for his friend, but it glossed over the fact that his friend’s insurance company should have provided him with an appropriate and well-fitted chair to meet his needs.

Some technologies offer a costly and flashy solution to a problem that is already being resolved, or that can be addressed with generic options for much less. Many blind people, for example, already use their phones to assist with navigation — they don’t need a separate piece of technology. People could learn American Sign Language to communicate with members of the deaf community. Advanced bionics look amazing and do nifty things, but many people with limb differences are perfectly happy with their existing limbs.

Disability dongles put the onus on disabled people

Disability dongles are not substitutes for access; instead, they are another barrier to full equity and inclusion. Members of the public view disability as a tragedy and a personal problem, so individualized tech “fixes” are appealing but ignore the larger issue: Why is everyone afraid of the big bad wheelchair?

Most frustrating is that disability dongles put the burden on the end user — the disabled person — rather than the people creating inaccessible conditions. The Americans with Disabilities Act has created a clear mandate for accessibility with guidance for same since 1990: We don’t need new laws or regulations for access and inclusion, we just need to enforce the ones we have.

Look to the horrific mess that is New York’s Metropolitan Transportation Authority for an example; disabled people are fighting tooth and nail for access in the decaying, heavily criticized subway system, one where newly renovated platforms lack elevators because officials say it’s “too expensive,” which a judge just ruled that is a clear ADA violation.

But making built environments accessible from the start is not always as expensive as many people think it is. Yes, retrofits to comply with the nearly 30-year-old Americans with Disabilities Act can get costly — but there are tax incentives and grants to help pay for them.

And disabled people are already developing accessible technologies that help with individual access needs; another story making the rounds covers LEGO braille bricks, presented as an amazing tactile learning tool for blind and low vision people. The only problem? Tack-Tiles, a similar invention, were developed by a father in collaboration with his blind son in the 1980s and remain prohibitively expensive because they were extremely difficult to take to production — LEGO could have invested in existing technology and lifted up work done by the disability community, rather than reinventing the wheel.

We’re already building, adapting, and hacking the technology; nondisabled people just need to get out of the way.

s.e. smith is a Northern California-based journalist and writer who has appeared in publications like the Guardian, Bitch Magazine, Esquire, Rolling Stone, and Rewire.News, in addition to anthologies including The Feminist Utopia Project and (Don’t) Call Me Crazy.

First Person is Vox’s home for compelling, provocative narrative essays. Do you have a story to share? Read our submission guidelines, and pitch us at firstperson@vox.com.

]]> s.e. smith <![CDATA[Betsy DeVos’s threats to the Special Olympics are cruel. But disabled people have bigger problems.]]> https://www.vox.com/first-person/2019/3/28/18285277/betsy-devos-special-olympics-budget-cuts 2019-03-28T15:57:22-04:00 2019-03-28T14:30:00-04:00
Secretary of Education Betsy DeVos testifies during her confirmation hearing. | Chip Somodevilla/Getty Images

The news that the Department of Education wants to cut the Special Olympics earmark in its 2020 budget proposal has sparked widespread outrage.

It’s understandable. The 51-year-old Special Olympics program, which offers programming in schools in addition to sports competitions and training for disabled athletes, has become an accessible and familiar face of disability. Though some in the disability community feel it feeds “inspirational” stereotypes and language like “special” demeans disabled athletes, it is widely beloved for the services it provides to the developmental disability community.

But the general public’s hyperfocus on the program is also frustrating; this cut is unlikely to make it into an appropriations bill, as seen when the department tried it last year. Meanwhile, other funding decisions that harm disabled students as well as all children most likely will get enacted, and they deserve broader attention.

The Department of Education is already chipping away at disability rights

The Special Olympics, a private organization, receives funding from a variety of sources, not just the Department of Education. Even if this request made it into the final budget, the organization would be able to recover, a point Education Secretary Betsy DeVos herself made in response to criticism.

Far more important are the 14 percent of all students who currently receive special education services that are already threatened by the Department of Education. At her own confirmation hearing, DeVos seemed surprised to learn of the existence of the Individuals with Disabilities Education Act, which extends key civil rights to disabled students and guarantees them a free appropriate public education. She immediately set about dismantling those rights. In 2017, the Department of Education withdrew 72 separate guidance documents relating to disabled students, citing a Trump administration mandate to eliminate “regulatory burdens.”

With a precedent like that, it shouldn’t come as a surprise that the newest budget proposal includes a number of hits for disabled students.

The continued promotion of “school choice” via charter schools and voucher programs, a pet cause of the secretary’s, is a particular concern. The proposal funnels $500 million to charter schools alone, an increase of $60 million over last year. But “school choice” carries an extra sting for disabled students who are less likely to be granted places in charter schools, cutting them off from the opportunities advertised by DeVos and her ilk. As for private schools, they don’t always require the important IDEA protections guaranteed to public school students.

There’s also $700 million for “school safety” programs, including expanding access to counseling and improving emergency response plans. This may sound superficially like a good idea. But it also includes “evidence-based practices for improving behavioral outcomes,” which sounds an awful lot like the increased use of surveillance and behavioral profiling in schools recommended in the final report of the Federal Commission on School Safety.

This is dangerous, as it tends to criminalize disability without making a meaningful impact on gun violence and other safety issues. Mentally ill and neurodiverse students can pay a high price for such programs, such as being forcibly medicated, arrested, suspended, or even expelled for non-normative behavior. By the way, despite government mandates, many school safety plans exclude disabled students, who may be left vulnerable during active shooter incidents, fires, and other emergencies.

Ignore the petty optics. Here’s what disabled students are in danger of losing.

The proposal would also defund Arts in Education by $29 million and the Department of Education’s contributions to supported employment by $22.5 million. Arts in Education has special programs for low-income and disabled students, while supported employment connects disabled people with jobs, helping them achieve independence. These services are available throughout people’s lives, but supported employment can be particularly empowering when people transition from school to adult life. The agency is also reducing funding to Gallaudet University for deaf students, independent living services, and other programs that support disabled students.

While not directly tied to disability, the federal tax credit offered to those who donate to scholarship programs is also bad news. Providing wealthy Americans with another tax dodge in the guise of “philanthropy,” the tax credit saps meaningful investment in improving our schools. Disabled students need strong public schools to access supports, services, and legal protections.

Trying to cut contributions to a beloved private organization is bad optics and a testimony to the petty cruelties of the Trump administration. It can be criticized on those grounds, but it’s important to engage with the much more pressing, much more real threats to disabled people in the education budget and Trump’s budget more broadly.

The proposed Special Olympics cuts will likely never come to pass — and may in fact be calculated to spark outrage so Republicans can look magnanimous when they decline to put it in the final budget, giving a “win” where one really isn’t deserved. But plenty of others will, and failing to pay attention to them could prove dangerous.  

s.e. smith is a Northern California-based journalist and writer who has appeared in publications like the Guardian, Bitch Magazine, Esquire, Rolling Stone, and Rewire.News, in addition to anthologies including The Feminist Utopia Project and (Don’t) Call Me Crazy.

First Person is Vox’s home for compelling, provocative narrative essays. Do you have a story to share? Read our submission guidelines, and pitch us at firstperson@vox.com.

]]> s.e. smith <![CDATA[Websites need to be more accessible for disabled people]]> https://www.vox.com/the-goods/2019/2/5/18210912/websites-ada-compliance-lawsuits 2019-02-05T08:35:41-05:00 2019-02-05T08:00:00-05:00

Beyoncé got an unwelcome New Year’s present in January: a lawsuit from a blind woman who says her website is inaccessible because it’s presented as a “purely visual interface” that makes it impossible for blind and low-vision people to use. According to the Americans With Disabilities Act (ADA), these kinds of barriers to access are a violation of civil rights, limiting communication and participation in society.

Instead of abating over time thanks to increased documentation on web accessibility and pressure from the disability community, this problem is only getting worse. The increasing domination of the digital space is also coming with heavier expectations around access and literacy; not being able to use the internet can be a barrier to finding, applying for, and retaining jobs, accessing government benefits, doing schoolwork, looking for love, and shopping for basic essentials.

The ADA and the internet came of age in the 1990s, both with promises of an egalitarian future — open and free access for all.

What went wrong?

“The idea behind the ADA was full inclusion of disabled people in all aspects of public and private life,” explains Lainey Feingold, a civil rights attorney with extensive experience in accessibility issues. Feingold advocates an approach called structured negotiation, which aims to keep people out of court with a collaborative process. But despite legal mandates, inclusion is not yet the reality for many disabled people.

Disabled people are about half as likely to be online overall, are less likely to have high-speed internet, and are more likely to have only one device for accessing the internet. The disability digital divide is stark, and it’s not surprising that in recent years, ADA lawsuits involving web access have been on the rise. Seyfarth Shaw, which tracks such suits, has seen an explosion since 2015 of lawsuits targeting web accessibility. Companies like Target, Toys R Us, Netflix, and TD Ameritrade have faced suits over inaccessibility, with the blind and deaf communities particularly active in this space, though web access can also be an issue for people with developmental, intellectual, and cognitive disabilities, among many others.

Coverage of such suits often positions the plaintiffs as whiners looking for a payout, drawing on rhetoric about “drive-by lawsuits” that has been used to undermine litigation over physical accessibility. Disabled people are demonized in these conversations as monsters trying to hurt mom-and-pop businesses, or mocked for wanting equal access to the internet, despite the fact that the integral nature of the internet makes it increasingly critical to be able to get online.

Imagine, if you will, shopping for something and being unable to click the “buy” button or read the price. Or getting most of the way through a transaction, only to discover that the button for submitting your order is not actually clickable. Or trying to order something that’s only described in the form of text in photos that you can’t see, making it impossible to know anything about the size, shape, color, and other characteristics of the product you want. Or looking at an uncaptioned product video and being unable to hear what the demonstrator is saying.

If that sounds frustrating, welcome to the lives of many disabled people, including me — the modifications I’ve made to my browser to make it accessible sometimes “break” commercial websites, causing snarls just like these. People who rely on screen readers to navigate the web can find it particularly challenging; here’s an example of what it’s like to try to navigate an inaccessible website with a screen reader.

The willful decision to keep the web inaccessible can feel like a slap in the face

These are all extremely surmountable obstacles. Numerous entities have developed accessibility standards, many of which are commonsense and should be baked right into the design of a website or app from the start. Accessibility improves navigability and usability not just for disabled people but for everyone, and it can be tremendously beneficial for SEO. For example, images should be described with alt text; videos should be captioned; links and forms should be labeled; users should be able to increase or decrease the text size with an on-site tool or browser setting.

Yet despite the fact that the Americans With Disabilities Act has been the law for almost 30 years, many companies don’t even consider accessibility when they’re developing sites and apps, and it shows.

“Accessibility is still a sidebar when it comes to web development,” Rachel Olivero, the director of technology at the National Federation of the Blind, tells me. Many people receive little to no training in the topic, and it’s not integrated into the early stages of design and development. In the app landscape, Olivero says, many of the engines people use to quickly build and distribute apps don’t include accessibility features. Poor accessibility in apps is a bad sign. In 2016, mobile browsing overtook desktop, and 77 percent of Americans own smartphones; the web as we know it is dying, the idea of a website almost quaint.

That leaves disabled people struggling to catch up in online spaces, an experience that can be uniquely frustrating. Accessibility can be a legal requirement for websites that are public accommodations, like retail sites. It is not an optional extra or something that’s nice to have, and the willful decision to keep the web inaccessible can feel like a slap in the face.

Some disabled people opt to reach out to websites they frequent to ask them to address accessibility issues and pursue legal means as a secondary option.

Others choose to go directly to a legal means for enforcing the ADA, and therein lies the crux of the controversy over the conversation about ADA suits, and a world of very shaky ground for disability advocates.

It’s undeniable that large numbers of both physical and online accessibility suits are being filed, often, Feingold says, by “a small handful of attorneys who have seized on a legal practice area and are not traditional civil rights and disability rights lawyers.” Many are taking place in states with so-called “mini ADAs,” which allow people to claim damages as part of an ADA suit — under the federal law, people can only demand a remedy to the accessibility problem and cannot receive a financial settlement beyond attorney fees.

Cynics claim unscrupulous attorneys are using the ADA as a tool to file dozens of suits in a short period of time with a model plaintiff, racking up attorney fees. Especially when it comes to suits involving visual impairments, the uniformity of the complaints seems to suggest that attorneys are “shopping” for sites to target by using tools ironically designed to help developers screen their work for accessibility so they can build better websites, like WebAIM’s WAVE. (WAVE, for what it’s worth, identifies a host of problems with Vox’s website, including empty or redundant links, missing alternate text, and contrast errors.) Olivero comments that such tools provide an imperfect and inadequate picture and cannot replace a paid accessibility consultant.

Whether we’re buying lipstick or submitting job applications, we should all be able to use the same tools

Some disability advocates agree that there’s a problem with suits filed with ulterior motives, and they fear this practice could be used to undercut very legitimate, and important, work designed to improve access on and offline. Criticizing such suits and pushing for action to resolve these issues can have the unfortunate effect of also tainting suits genuinely rooted in a desire to improve online accessibility, like those the National Federation of the Blind has litigated.

In response to the uptick in ADA suits, conservatives are pushing for laws that would modify the ADA itself, requiring potential plaintiffs to go through a lengthy process and only taking the case to court after these steps have been followed. This would effectively disincentivize proactive accessibility measures, as businesses could remain inaccessible and try to run out the clock.

Notably, most of these questionable suits come from a small number of attorneys who could be managed with bar discipline, leaving the ADA intact while reducing the number of exploitative suits that have less to do with access than they do with profits.

Feingold stresses that when it comes to digital accessibility, lawsuits are a path of last resort, but she also doesn’t want to see the ADA’s protections weakened. “We don’t want anything to happen to the ADA,” she says, noting that the ADA is an incredibly powerful civil rights law.

There’s a lot at stake in conversations about accessibility lawsuits; we cannot overlook the problematic nature of some of these suits, but even as we question their motivations, we need to be mindful that the Americans With Disabilities Act and its accessibility mandates are the law, and full integration into society for the disability community is not just a legal right but a moral one. Whether we’re buying lipstick or submitting job applications, we should all be able to use the same tools.  

s.e. smith is a Northern California-based journalist and writer who has appeared in publications like the Guardian, Bitch Magazine, Esquire, Rolling Stone, and Rewire.News, in addition to anthologies including The Feminist Utopia Project and (Don’t) Call Me Crazy.

]]> s.e. smith <![CDATA[Products mocked as “lazy” or “useless” are often important tools for people with disabilities]]> https://www.vox.com/the-goods/2018/9/20/17791354/products-people-disabilities-sock-slider-banana-slicer-lazy 2018-09-20T10:59:14-04:00 2018-09-20T08:30:02-04:00

On a June episode of his show Last Week Tonight, John Oliver went in on a product called the Sock Slider. While discussing the same topic on the Hannity Show, he took a moment to highlight the dwindling number of companies willing to associate themselves with his news program — ”My Pillow, Recticare cream, and of course, the Sock Slider.”

Audience members roared with laughter as Oliver rolled footage of a Sock Slider ad, featuring people moaning and groaning dramatically as they struggled to put on their socks before trying out the device and beaming at the ease of use. The camera cut back to Oliver chuckling to himself as he mocked the device and the people who use it.

You’ve probably seen examples of these kinds of “useless products for lazy people” before. Things like banana slicers, egg separators, jar openers, buttoners, tilting jugs for dispensing liquids, and much more are the subject of constant amusement on the internet: “Who uses these kinds of things?” “You don’t need an avocado slicer.” These products are typically positioned as “useless” in scathing roundups of products no one could possibly need, representing little more than wastes of plastic and resources.

Imagine being unable to slice a banana over your morning cereal because your hands are paralyzed or joint contractures make it hard to grip both the banana and the knife. If you’re a baker who loves making cakes, what would you do if you couldn’t separate an egg by casually cracking it on the edge of the bowl and using the shell to tease the yolk and white apart? The inability to perform these kinds of activities independently can have huge consequences for people with disabilities.

A variety of impairments can make these tasks challenging, including hand tremors or weakness, paralysis or paresis, limited range of motion, arthritis and other joint conditions, chronic pain, neurological disabilities or stroke, developmental disabilities, and amputations. These issues may be congenital or acquired or even temporary. Some people, for example, just need support while they recover from surgery or injuries. And so those products Oliver and the internet at large enjoy mocking? Not so useless after all.

“Useless” products can actually spell independence

”If I didn’t have that silly piece of plastic with ropes, I wouldn’t be able to put socks on,” says Emily Ladau, a disabled advocate, writer, and speaker with Larsen syndrome, a congenital skeletal disorder. (She’s talking about a similar device, not the exact as-seen-on-TV gadget.)

Ladau, who uses a wheelchair for mobility, cannot bend over to put on socks. Without a “sock putter-onner,” as she calls it, she would be forced to rely on the assistance of a personal care attendant (PCA) to put her socks on every morning. “Something that people think is a silly piece of plastic is one of the reasons I don’t need a PCA when I travel.”

Ladau, like other people with disabilities, is used to seeing late-night hosts, internet memes, and people on social media mocking the “silly pieces of plastic” that can be life-changing. For her, the sock slider and an extended shoe horn represent freedom; imagine being literally unable to put on socks unassisted before leaving the house on a cold winter day, and not being able to slip your socked feet into a pair of sturdy boots on your own.

Sometimes, living independently as a member of the disability community means having to rely on a little help, and in many cases, a gadget can be very useful. Help may also take a human face: Personal care assistants, aides, home health attendants, and other direct service professionals are vital, though there’s also a heavy social expectation that family members provide unpaid caregiving labor, a practice many people with disabilities oppose along with other exploitative labor practices.

If you can’t use your hands to open a jar of pasta sauce, does that mean you should live in an institution?

In many cases, wasting these services on tasks that people could perform with the assistance of a gadget is not very efficient. Nor do people with disabilities necessarily want to use such services this way.

Kim Sauder, a disability scholar and advocate, notes that people with disabilities may not want to be forced to wait for help with tasks like peeling oranges; there’s something very dehumanizing about the thought of just wanting a snack and being stymied by a rind you can’t remove on your own. Plus, says Ladau: “I get frustrated by the notion that I should always be okay with asking for help. I’d like to try to use my own solution.”

And attendant care is expensive, costing a median of $45,000 annually in 2015, according to the Kaiser Family Foundation. Few people pay this cost out of pocket: Instead, it’s typically part of the Home and Community-Based Services (HCBS) benefits provided to the disability community and older adults under programs like Medicaid and Medicare.

For those who use these government programs to pay for part or all of their services, there’s no guarantee that officials will authorize enough work hours to provide all the assistance someone needs. The amount of benefits provided is dependent on a “needs assessment” in which an evaluator meets with a disabled person to determine the extent of services they require. Many people with disabilities complain that these assessments tend to understate the amount of care they need, taking a “budget-driven” approach.

Furthermore, being unable to perform tasks independently can force people into institutional settings if they lack the support systems needed to survive. Whether you call them useless inventions, lazy products, or pointless gadgets, says Greg Hartley, a faculty member at the University of Miami’s physical therapy department and president of the Academy of Geriatric Physical Therapy, a component of the American Physical Therapy Association, these tools can enable people to lead their lives on their own.

“[Instead of having] to go to someplace that requires a lot of assistance and ultimately a lot of money, these little things can make huge differences in people’s quality of life, enabling them to be independent and have a sense of self-worth,” Hartley says.

Unwittingly, critics of “useless products” are sitting at the core of a battle the disability community has been engaged in for decades: The right to live in their communities, and to receive the services that enable them to do that. If you can’t use your hands to open a jar of pasta sauce, does that mean you should live in an institution? Republicans attacking Medicaid funding have HCBS squarely in their sights, a policy change that could be devastating to the disability community.

But for those complaining about cost overruns, pushing people into institutions is also bad economics. In 2012, the National Council on Disability found that HCBS is less expensive than institutionalization, and you can see why: Many of these products cost less than $40, while institutionalization can cost more than $300,000 annually in some states, much less affordable than attendant services. (Although many people with disabilities argue attendants should be paid more.)

An adult sippy cup won’t make the difference between staying at home and going into an institution — and the government certainly won’t pay for it — but it can sit at the cusp of a slippery slope between being able to live independently and being forced into institutional care.

Some of the most useful products for people with disabilities weren’t developed with them in mind

Products like the banana slicer, pizza shears, or similar items, says Hartley, can be especially useful for people who can’t safely or comfortably use knives. That can include people with disabilities who have impairments that make it hard to grip and direct their movements, as well as older adults struggling with arthritis and declining hand strength. These products can also help with cooking in less-accessible spaces: A wheelchair user who is using a cutting board on their lap because they can’t reach the counter may not want to use a knife.

Still, not all of these “useless inventions” were developed with the disability community in mind. Monique Haas, of the Hutzler Manufacturing Company that makes the infamous banana slicer, explains: “We are trying to look at what would make life in the kitchen easy for anyone and everyone. We do have a lot of one-handed things, just because it is easier to use one hand.”

While the product became the subject of mocking commentary in the early 2010s, she says, it had already been in their product line for a long time. And in case you’re wondering, the company has a sense of humor about its cult status. “If you read the reviews on Amazon, you will be rolling with laughter. They are really creative, they are really funny.”

These universal design practices are something people with disabilities are aware of. Sauder sometimes likes to turn the conversation back on people who make fun of convenience devices. If an egg separator or a shower chair is “useless,” “I expect you to take things out of the oven without gloves,” she says.

Unfortunately, she notes, the shaming around such items tends to push people with disabilities to try to do without, something Ladau notices as well. “Sometimes I feel like I’m deterred from making some of these purchases,” she says, “because I think society has this mindset that it’s all just another gimmick.”

People with disabilities themselves often end up filling the gaps for those who haven’t or can’t access professional services. They swap tips and tricks for products that have worked for them, like using household tongs as convenient reachers. (Tongs are another item Ladau often includes in her luggage, much to the confusion of the TSA.)

This kind of innovative repurposing of tools for accessibility purposes is common in disability spaces. Sometimes no viable product exists at all, and at other times the commercial version comes with an “accessibility tax” that makes it far too expensive.

Take, for example, people with disabilities who started using iPads as communication tools instead of cumbersome and expensive purpose-built tools covered by Medicaid. The Allora Speech Generating Device, for example, starts at $6,000. An iPad Mini can cost less than one-tenth the price, with no lengthy delivery time and a much easier interface. Buying a robot vacuum cleaner can cost a few hundred dollars, which more than pays for itself when the owner doesn’t have to rely on an aide to do light housekeeping.

The internet makes it easier than ever for context to be stripped away

The internet can have a flattening effect on the way humans view each other. On social media, people jostle for the most memeable, shareable, viral content, and don’t consider the consequences. Sauder notes, for example, that a tweet making fun of peeled and packaged oranges has gained notoriety multiple times, even after people with disabilities have criticized the sentiment behind the original “joke.” Each time it pops up in Sauder’s timeline under a new name, it goes viral all over again.

It’s easy to strip content of both context and empathy, whether intentionally or otherwise. And with the speed of distribution and the internet’s love of screenshots, everything is forever. When content mocking the disability community — like memes about ambulatory wheelchair users getting up to grab something high at the store — spread like wildfire, commentary from the affected community is rarely attached. This has a dehumanizing tendency, creating a world that rewards judgmental, snappy commentary and eliminates nuance.

When viral content dips into commentary about people’s identities, it can take on sinister overtones that cut both ways — a tweet mocking a low-vision person reading a book on the train can hurt just as much as inspiration porn that uses people with disabilities as Very Special Object Lessons. (Think “what’s your excuse” posters featuring disabled athletes, or “heartwarming” viral stories about disabled children.)

For the disability community, that thing the internet mocks may be a lifeline. And pushing back on these attitudes, Sauder says, can be exhausting.

Imagine losing the use of your left arm in a stroke and then seeing people mock the buttoners, zipper pulls, and other tools you use to get dressed one-handed. It’s not just that people with disabilities have a use for items like these and are tired of hearing that they’re wasteful or silly: When the need for such products is called into question, it can exacerbate social divides that contribute to larger policy issues that keep people with disabilities from public life, whether it’s the frenzied call for straw bans, claims that complying with the Americans with Disabilities Act is too onerous, or applying work requirements to Medicaid.

A sock slider, it turns out, is never just a sock slider.

]]> s.e. smith <![CDATA[Banning straws might be a win for environmentalists. But it ignores us disabled people.]]> https://www.vox.com/first-person/2018/7/19/17587676/straws-plastic-ban-disability 2018-09-10T06:43:19-04:00 2018-07-19T08:50:02-04:00

There are few things more heartbreaking than hearing from “progressives” that my life, and those of other disabled people, is not worth living — that we should be left to die if we can’t adhere to the latest performative progressive trend.

We are used to hearing this. In the past few weeks, it’s been on hyperdrive as the war on drinking straws has escalated, pushed by environmental groups over protests from members of the disability community.

It started with viral videos of marine life with straws wedged in their nostrils, pushed by groups like Stop Sucking and the Ocean Conservancy, and picked up by sites like Treehugger, BuzzFeed, and the Dodo. The gut public response was that all plastic straws should be banned from the face of the earth, and marine life shouldn’t be suffering for the sake of our frappuccinos.

The movement that ensued was a push to ban (single-use plastic) straws. A growing list of companies like Starbucks and Hyatt are dropping straws, while Seattle, Vancouver, San Francisco, New York City, and many other cities have banned or are thinking about banning plastic straws, as Hawaii and California consider statewide bans.

But the disability community reacted with alarm right away. Disability studies scholar Kim Sauder was one of the first to express concerns about the implications, bringing up an issue that many nondisabled people — and some disabled people — hadn’t considered. Some people need straws to drink because they are unable to lift a cup to their mouths. And there are reasons more environmentally friendly alternatives are not a universal fix, such as allergy concerns with plant plastics, the risk of breaking glass straws with facial tics, or paper that disintegrates under pressure, illustrated in the form of a convenient chart by activist Sarah Packwood.

Renewable straws are not an option for many disabled people

Comparatively speaking, I’m lucky. Although I have hand tremors and facial nerve damage, I can drink fluids unassisted, and I don’t need a straw to do so — most of the time. When I do need a straw, a plastic alternative is fine. But other disabled people must use plastic straws because of the nature of their impairments. They can’t drink out of a standard cup or use a sippy cup.

Reusable straws can be hard to maintain and sterilize, and may not be safe to use, while compostable products, which can dissolve in hot liquids, present a choking and allergen hazard. It’s always going to be a good idea for restaurants and coffee shops to keep plastic straws on hand for disabled people.

Nondisabled people ask what we did before straws existed, and I have harsh news for them: We died. Or we lived in abusive, grim, isolating institutions where we didn’t need straws because we got 24-hour attendant care.

Disability rights advocate Lawrence Carter-Long notes the bendy straw was an “early example of universal design” — inclusive design that benefits disabled people, older adults, and nondisabled people alike, like the curb cuts that help wheelchair users, people with walkers, and parents with young children. Flexible straws were developed to help people drink in hospital settings. As someone who was unable to drink independently in a hospital, I can tell you the appearance of a nurse with a cup of water and a jaunty bendy straw is one of the most heavenly sights imaginable. Even with an IV running full-bore, there is nothing to replace the sensation of a deep, refreshing sip.

That’s what straw ban advocates want to deny us. Bring up straws on social media and you’ll find people so intent on banning plastic straws that they’ll list a litany of alternatives like metal, glass, paper, bamboo, pasta, or compostable plastics that don’t work, or say that anyone who defends straws must be “lazy.”

What we hear when people don’t want to listen to us is that we don’t matter. This kind of rhetoric is familiar. After all, we’ve been hearing we’re drains on the system and wastes of resources for our entire lives. This is just the latest chorus of an old song, and it’s enabled by a growing list of public figures who thoughtlessly parrot rhetoric about how straws should be banned, full stop.

We can save the environment and still be inclusive toward the disabled community

Of course, disabled people share concerns about the environment. Lightweight, ubiquitous single-use products like straws, plastic utensils, plastic bags, and the like are definitely problematic — they’re prone to escaping at recycling centers, tumbling across the landscape to litter the natural environment.

We’d like to see less plastics in the world too. But straws make up a tiny fraction of what’s in the ocean. Images of wildlife impaled on straws and filling their stomachs with plastic are disturbing, but the real problem is microplastics, which result from the breakdown of plastics in industrial waste and bioaccumulate across the marine food chain.

Let me be blunt: Screeching at us about straws is not going to fix the problem of plastic. For that, we need to go higher up the supply chain, rethinking when and how we produce plastics across the board instead of shaming disabled people who are piping up about our needs. And disabled people need to be included in the conversation about reducing plastic waste — our needs matter just as much as trees and sea turtles.  

s.e. smith is a Northern California-based journalist and writer who has appeared in publications like the Guardian, Bitch Magazine, Esquire, Rolling Stone, and Rewire.News, in addition to anthologies including The Feminist Utopia Project and (Don’t) Call Me Crazy. 

First Person is Vox’s home for compelling, provocative narrative essays. Do you have a story to share? Read our submission guidelines, and pitch us at firstperson@vox.com.

]]> s.e. smith <![CDATA[Disability is a hidden side of the police violence epidemic]]> https://www.vox.com/2016/10/4/13161396/disability-police-officer-shooting 2016-10-04T11:30:08-04:00 2016-10-04T11:30:03-04:00

As of October 3, at least 814 people had been killed by police in the United States in 2016, according to the Guardian. One of them was a man named Keith Lamont Scott, who was shot to death on September 20 in Charlotte, North Carolina. His wife filmed, while pleading with police, “Don’t shoot him,” and informing them he had a TBI, or traumatic brain injury.

The following week, police in El Cajon, California, responded to a 911 call about a man who appeared to be in an altered state due to an unspecified “mental illness.” When they arrived, they shot Alfred Olango because they thought he was pointing a gun at them (as it turns out, he was holding a vape pen). According to witnesses, he had a seizure shortly before police arrived.

Just days later, the wife of an allegedly bipolar man in Pasadena said he called the police for help — but when they arrived, they tased Reginald Thomas, beat him with batons, and kicked him. He died at the scene.

These three men, individually, faced completely different police forces in very different settings. They had three things in common: They were black, they were killed, and they were disabled. Scott, Olango, and Thomas joined the ranks of disabled people killed by police in encounters gone horribly wrong in America, as well as the ever-growing list of black Americans killed by police. The police in these cases almost always go without facing any criminal charges, and those who do are rarely found guilty.

Due to the lack of federal record-keeping, we can’t even tell you precisely how many people are killed by police in the US in any given year, let alone how many of them are disabled. But we do know it’s a lot: A report from the Ruderman Family Foundation earlier this year found wildly varying estimates of the number of disabled people killed by police, from 25 percent to more than 40 percent of police shooting victims. For perspective, census data puts the overall incidence of disability at about 20 percent of the population.

As with overall police killings, this data is hard to track, and advocates rely on media coverage, reporting from families and witnesses, and the few police departments that do disclose the statistics of officer-involved deaths. Often, disabilities go unidentified or undiscussed, which obscures the extent of disability involvement in the police killing epidemic.

Whether killed on scene or dead in custody, disabled people with a huge variety of impairments have systematic problems interacting with law enforcement. Ethan Saylor, killed in a chokehold in 2013, had Down syndrome. Sandra Bland, who died in custody in 2015, had epilepsy. Kajieme Powell, killed just days before Michael Brown in 2014, had schizophrenia. John T. Williams, a deaf Native American woodcarver, was killed in Seattle in 2010. Eric Garner, who died in a chokehold in 2014, had asthma. Daniel Harris, killed by a North Carolina state trooper this year, was deaf.

Jeremy Mardis, who had autism, was 6 years old when he was killed by Louisiana police in 2015. Joseph Weber, also autistic, was killed “in self-defense” in August. Melissa Boarts, who had bipolar disorder, was killed in a traffic stop this spring. In July, Joseph Mann, a homeless mentally ill man, was shot 14 times by police after they attempted to run him down with their patrol car. Jeremy McDole, who used a wheelchair for mobility, was shot in 2015. In 2014, Kaldrick Donald was shot by police after his mother called asking for help because he was in mental health crisis.

There is a growing awareness among the non-disabled public that to talk about police violence in the United States, it is necessary to also talk about disability and the role it plays in an alarming number of police shootings. But this is not just an issue of disability. It is also an issue of race, because many of the disabled people killed by police in America are people of color, with black and native men being particularly common targets. This is an intersectional issue — we cannot talk about one without talking about the other.

It’s also more tangled than many people realize. Disabled people and people of color are both at increased risk of being killed by law enforcement, which puts disabled people of color in a particularly dangerous position. At the same time, people of color in the United States are generally more likely to be disabled, or to lack adequate care, due to factors like environmental racism, occupational segregation, and poor access to health care. This is a systemic inequality that begins long before a fatal interaction with police ever takes place.

A huge range of impairments may interfere with someone’s ability to understand and comply with requests from police in even the most optimal of circumstances, including deafness, blindness, and mobility impairments, along with cognitive, intellectual, and developmental disabilities. People with conditions like asthma, epilepsy, or severe migraines might be temporarily incapacitated. Mentally ill people in crisis may not only fail to understand police but could be actively afraid of them, or may turn combative from confusion and stress.

The sheer complexity of interacting with disabled people makes police reforms challenging, but it’s an issue that has a great deal in common with the work communities of color are performing to push back on the stereotypes and attitudes that lead to horrific outcomes in law enforcement encounters. In fact, disability is part of the guiding principles of Black Lives Matter, highlighting the intersectional movement work that has been driving conversations about police reform all along, albeit not necessarily in the spotlight.

Law enforcement officials in some regions of the country are exploring tools like mental health crisis teams, with officers specifically trained in deescalation and nonviolent conflict resolution. Yet in the Olango case, the clinician who would have been dispatched to go out with the officers was on another call. And after Saylor died in police custody, Maryland mandated disability awareness training for its law enforcement officers, but the training only covers developmental disabilities, not the myriad other disabilities officers may encounter.

Multiple cities have an accommodation or “special citizen” registry to allow disabled people to proactively put their disabilities on file, so responding officers may know what to expect when they arrive at a scene, but not always — and knowing what to expect is no guarantee of a safe outcome, as seen in numerous cases of mentally ill people killed by police when they or family members called for help in crisis.

Many of these approaches are flawed in that they approach policing on an individual basis but don’t pull back to take a larger look at how and why policing is done. For example, organizers for the movement for black lives argue for a national database of use of force encounters, along with demilitarization of police forces and other moves that would promote a return to community policing.

For disabled people, reforms to health care in America, especially mental health services, would reduce the incidence of medical and psychiatric crises that require emergency services, and funding for non–law enforcement response options would keep police uninvolved unless absolutely necessary. Comprehensive training for officers in interacting with disabled subjects, led by self-advocates, should supplement larger reforms, not replace them or act as a stopgap.

A rapid series of high-profile cases of police shootings involving disabled people and marked by protests across the United States could prove the spark that brings disability into the wider eye.

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