California poppies in bloom.

Accessibility in Utopia

In its simplest form, accessibility is usually defined as changes to the built environment designed to enable full participation by and inclusion of disabled people . Ramps and grab bars are common examples, with accessibility also extending to the presentation of materials in multiple formats to meet varying needs. Braille and sign language, for example, are provided for blind and vision-impaired people as well as D/deaf and hard of hearing people respectively. Likewise, accessibility can include modification of materials and curricula to accommodate disabled students, the provision of quiet rooms at conferences for autistic attendees, and other measures intended to make the environment more pleasant and functional for people with cognitive, intellectual, and developmental impairments.

These are measures that I term “physical access” both in my work and for the purpose of this essay. They are all intended to create more welcoming environments, and in some cases are required by law; the Americans with Disabilities Act (ADA) in the United States, for example, has stringent requirements for new public construction mandating features like ramps and accessible bathrooms in order to ensure equal access for disabled people. Yet, over 20 years after the passage of the ADA, compliance rates are still extremely low.

The fact that a law had to be passed in the first place is an illustration of ableism and how it functions in society: that people don’t think disabled people should automatically have access to all the same public spaces nondisabled people do is striking. And the surprise at the amount of agitation from disability activists on the subject is notable as well, with mainstream society behaving as though this is something new. The disability rights movement has been active for over 100 years, lobbying for the rights of disabled factory workers in the Industrial Revolution, returning soldiers in the First and Second World Wars, and more. Disabled organizers participated in the upsurge of civil disobedience and protests during the Civil Rights Movement, and fought hard for the passage of the ADA and similar legislation as well as court verdicts like Olmstead versus L.C. . Their fight has always been one for full access and inclusion.

Yet physical access only scratches the surface of the needs of the disability community because no access is complete without emotional access. Herein lies the difference between tolerance and integration, between benevolence and inclusion, between indulgence and solidarity. As long as disabled people are considered Other and treated as something alien, full access can never be wholly achieved, because they will continue to be pushed to the margins and they will be considered a burden rather than fully participating members of society.

The nondisabled gaze is one among many social divisions created by Othering: the male gaze, the white gaze, the heterosexual gaze, for example. These contribute to a framework of structural discrimination that creates intergenerational suffering and perpetuates harmful and erroneous ideas. Nondisabled people view disabled people as something exotic and fascinating to be stared at, poked, prodded, and questioned; to be visibly disabled is to be constantly subjected to a tide of commentary when out in public, while being less evidently disabled is an exercise in being told one is “faking” or that observers “never would have guessed,” as though being forcibly passed as nondisabled is something of which one should be proud.

The world of the future, and the world we can and must build, is both physically and emotionally accessible; utopia is a world in which people with impairments are unremarkable as members of society, working side by side with their nondisabled counterparts. And utopia is also a place where people never have to pause, think, and consider access issues when making plans to do anything, including leaving the house or engaging in a casual conversation.

Not Through Legislation Alone

Just as with other vulnerable groups in the US, disabled people are expected to defend their rights themselves, even though they have the least power to do so.

As civil rights warriors of all stripes are already well aware, legislation alone does not magically create human rights from thin air. Almost 50 years after the Civil Rights Act of 1964, the United States is still rife with racial problems, including redlining, voter suppression, a skyrocketing prison population, and healthcare disparities. Passing a single law didn’t magically create a world in which people of color didn’t experience discrimination. It created a world in which the seeds were sown for actively identifying and prosecuting discrimination, and a message was sent from the government to the people that discrimination was something to be taken seriously.

Just over 20 years after the ADA’s passage, many public spaces in the US remain inaccessible, including new construction and buildings that had undergone remodeling post-ADA. In other words, despite knowing about their legal responsibilities, developers, owners, and other project managers declined to make their structures ADA-compliant. Compliance is only enforceable through lawsuits, which many disabled people cannot afford to file, so noncompliance is often allowed to fester because there’s no alternative.

Just as with other vulnerable groups in the US, disabled people are expected to defend their rights themselves, even though they have the least power to do so. And many sit at key intersections that make their circumstances even more complex, with interlocking oppressions tying back through and around each other in a Gordian knot of injustice.

Low-income people and people of color are more likely to experience disability because they are more likely to live in polluted areas, to work in dangerous occupations, and to experience health problems that they cannot afford to treat until significant complications have set in and they are forced to go to the hospital. They’re exposed to more risk factors for impairments, yet they’re less likely to have access to compassionate, affordable, safe health care, and those who can access health care still experience disparities. For example, breast cancer is diagnosed later in Black women than white women.

The experience of disability in general can also be very different for women, particularly those at class and race intersections. Disability is often represented culturally by the figure of a white man, in the form of a wheelchair user, blind man, or D/deaf man. This in no way does justice to the complexity of disability and the disability community, and ignores specifically gendered issues within the disability community. Chronic pain occurs primarily in women, for instance, who remain undertreated for it, and women are more likely to experience conditions like fibromyalgia and chronic fatigue syndrome, which can be challenging to diagnose and are often written off as “yuppie flu” or invented illnesses despite their very real-world effects.

The very practice of medicine revolves around treatment of a normative white male body, which means that warning signs and symptoms are often missed in marginalized groups. Heart attacks, for instance, present very differently in women than men, and women react differently to some medications. A lack of interest in gender parity in medical treatment has made women particularly vulnerable to malpractice, and that occurs on top of medical sexual assault and other violations of women that occur in medical settings.

Disability’s position at the intersections of such issues creates a unique set of vulnerabilities that can be exacerbated over time as people struggle to survive. Disability in the United States is a sentence to poverty unless you are independently wealthy or have a wealthy family; in other words, unless you are middle class and white, your experiences with disability are likely to be extremely challenging. Disability benefits lag far behind the cost of living with disability and they must be pried from the hands of the government agencies that administer them. Working, even a little bit, can jeopardize these benefits, trapping disabled people between a rock and a hard place, as chronicled by Paul K. Longmore in Why I Burned My Book.

Disabled people have to fight for any and all accommodations and assistance, from an aide in the classroom to help a disabled student to a home health worker. Often, family members, usually women, are forced to provide free caregiving if they want to keep their loved ones at home rather than forcing them into a nursing home, illustrating another complex intersection of disability and gender. This creates considerable stress, and, in an ironic twist, can also expose caregivers to the risk of health problems and future disabilities themselves. Tasks like wheelchair transfers, for example, can cause back injuries when performed by people who lack the training or strength to do so safely.

Gay, lesbian, bisexual, queer, and trans disabled people can face double discrimination as they’re hated and feared for their sexuality and gender as well as their disability. They may struggle to find care, and this can be a particular concern for elders and people forced into institutions who may experience even more abuse than usual because of who they are.

“More abuse than usual” is a chilling thought in a nation where institutions are filled with people who are raped, beaten, left to lie in their own urine and excrement, deprived of necessary medication, and killed. Outside the institution, life is not necessarily better; disabled women in particular are extremely vulnerable to abusive relationships that they may not be able to escape because they rely on their partners as caregivers, or their partners control all contact with the outside world as well as their medications, finances, and other means of survival.

Other disabled people may find themselves struggling in sheltered workshops where they make pennies per hour. Companies like Goodwill, gallingly, claim to help people with disabilities, yet they criminally underpay their disabled staff members under outdated laws permitting companies to pay below minimum wage to disabled employees.

Feminism and Disability

Disability is something that should be so evidently and obviously a feminist issue as to make any articulation of the connections between disability rights and feminism unnecessary, but sadly, it is needed. Disability is an issue of bodily autonomy, integrity, and injustice. Many disability issues disproportionately affect women. The disability rights movement needs feminism, and feminism needs the disability rights movement.

…throughout its history, the larger feminist movement has discriminated against disabled people—one of the reasons I am not a feminist—and that holds true as much today as it did historically.

Yet, throughout its history, the larger feminist movement has discriminated against disabled people—one of the reasons I am not a feminist—and that holds true as much today as it did historically. As many commentators have noted, the public mainstream face that dominates conversations about and definitions of feminism has a significant intersectionality problem, focusing so narrowly on a “we are all one” vision of women that it leaves out the specific lived experiences of women who live at the axes of multiple identities: women of faith, disabled women, women of color, LGBQT women, low-income women. The very women living at these intersections who work within the feminist movement are erased under this framing.

Priorities articulated by the primary public face of the feminist movement are not necessarily those of members of these groups of women, yet, feminism should be for them too—and for many of them, it is, because they force themselves into the movement at high personal cost. They work within feminism to advance their cause alongside that of the larger movement, to push for recognition that their issues are the movement’s issues, not side topics that can be covered once the revolution has been won. Indeed, winning equality and fair treatment for only a limited group of women brings society backwards rather than forwards. When white women gained the vote at the cost of the Black community, by refusing membership in their suffrage organizations to Black women and suggesting that giving white women the vote was the only way to counteract the Black male vote in the South, that was not a moment to be proud of, for example.

When birth control became readily available at the cost of women of color who had been used as experimental populations, that was not a moment to be proud of. Nor were the “victories” of the reproductive rights movement at the hands of eugenicists like Margaret Sanger who frequently lectured on controlling reproduction among “the disabled” and “the poor” that centered around limiting the right to reproduce among poor women, women of color, and disabled women. Nor are the same-sex marriage victories for middle class white lesbians a victory when they ignore the skyrocketing homelessness rate among LGBQT youth, especially those of color. When anti-porn feminists suppress sex work, they drive women of color and trans women relying on sex work for survival underground, making their lives that much more dangerous. These are not victories, but rather failures, and things for which feminism should be ashamed.

In all of these cases, from early suffrage organizing to sex worker rights, people have organized their own movements in response, and pushed from within feminism to force for change, but they haven’t received the same recognition as their mainstream counterparts. Feminists should be able to unite in solidarity, even for causes that don’t personally affect them.

This is something that should be possible for a movement full of driven, passionate people, yet, thus far, feminism as a collective hasn’t arrived at this crucial tipping point for true social change. In order to achieve utopia, first we must revise our vision of what utopia looks like, and remember that it is a place for all, not merely those who fit within a very narrow set of definitions. In utopia, there are no barriers, either physical or emotional, to full inclusion.

Utopia isn’t senseless to difference, but it embraces and warmly welcomes it rather than fearing it. It is celebrated as part of the human experience rather than something undesirable and Other, which is why people of all different backgrounds, heritages, bodies, and minds are active participants in it. This is a world in which capitalist notions of class, “worth,” and “contributions to society” are upended and thrown out to create a new world order. This is a world in which disabled people are loud and proud, and never forced to justify their existence either within the feminist movement or in the world in general.