ableism – UAB Institute for Human Rights Blog

Violent Ableism: A Structural Epidemic

Warning: This blog includes content on violent acts against people with disabilities.

Last week, James Quilter was nearly strangled to death last week by his own mother. Quilter, 21, is a nonverbal autistic man with Langer-Giedion Syndrome. His mother became enraged after seeing a mess created by her son. Screaming for him to die, Gidget Quilter pushed James to the ground and choked him in front of her other six children.

Stories like this are not uncommon. Children with disabilities suffer from physical abuse at a rate over four times higher than children without disabilities (WHO). Parents of children with disabilities may lack a nuanced, informed understanding of disability. Lack of knowledge in itself shouldn’t be demonized, but ableist misinformation has dangerous and even fatal results. Abled parents may think of their child’s disability in terms of their own experience, creating selfish motivations with detrimental results. This perspective has led to disability advocacy organizations that are operated by and designed around abled caregivers and parents. In these spaces, the conversation is warped to emphasize “fixing” and eradicating disability instead of empowerment. This perpetuates dangerous stereotypes and justifies people like Gidget Quilter.

Protesters from Autistic Self-Advocacy Network hold signs that say "I am not a puzzle, I am a person" and "Autism Speaks does not speak for me" at the Walk Now for Autism fundraiser in Portland, OR. — “not a puzzle.” Source: Philosophography, Creative Commons.

As I have discussed in earlier posts like Disability History: Overlooked but Not Forgotten, ableism is a phenomenon based on implicit negative bias towards disability that is played out on every level of society. Ableism is rooted in widespread bodily expectations of “perfect” ability. All actors within ableist systems have the burden of meeting sociocultural bodily expectations. On an abstract level, anyone not meeting ability expectations is expected to accept the risks that come with perceived weakness/vulnerability; anyone who meets the standard for ability expects immunity for enforcing ability expectations, even if violent. In a society that rewards and idealizes normality, hatred is often directed at anyone showing otherness or “abnormality.” Audre Lorde discusses this frankly in her classic collection, “Sister Outsider.”

“Institutionalized rejection of difference is an absolute necessity in a profit economy which needs outsiders as surplus people. As members of such an economy, we have all been programmed to respond to the human differences between us with fear and loathing and to handle that difference in one of three ways: ignore it, and if that is not possible, copy it if we think it is dominant, or destroy it if we think it is subordinate” (Lorde, 1984:77).

In blogs like the one mentioned above, I chose to leave out details on the suffering of people with disabilities. This was intentional, as I wrote, “It’s exhausting and demoralizing to read about these things as a disabled person. It also encourages unneeded pity from non-disabled people. Though pity may come from good intentions, it only reinforces dehumanizing attitudes.” I stand by this sentiment, especially in the context of empowering historical narratives, but it feels critical to bring attention to violent ableism in its own piece.

Violence is a mechanism by which individuals assert ableism, but not all cases of ableist violence are as visible as the attack against James Quilter. Violence, according to Galtung, is enacted when “human beings are effectively prevented from realizing their potentialities,” (1969:170) or when there is an ability to avoid harm that is neglected in favor of others’ benefit. This encompasses deprivation of health through personal violence (direct violence) and social injustice (structural violence). Personal or direct violence is further understood as having both physical and psychological components. In the following subsections, I will identify psychological/internal violent ableism, physical/direct violent ableism, and the structural violence of ableism. All of these elements compound into a fundamentally ableist world in which people with disabilities face endless barriers to empowerment and liberation.

This image shows a red figure in a wheelchair that appears to be made by fingerpainting. There are three lights shining at the top of the image. — “Disability.” Source: Abhijit Bhaduri, Creative Commons.

Psychological / Internal Violence

Disability has long been viewed as a deficit in ability, with blame for impairment placed upon the disabled individual. This framework instills a deep sense of inadequacy and shame for people with disabilities, amplifying when the disabled individual relies on the assistance of others or social welfare programs. Internally, shame is generated by the weight of burdening others in societies that assign value to self-sufficiency. Shame reinforces a lack of self-esteem that further impedes participation in society. This process has been disrupted with personal empowerment made possible with the social model of disability. Per Tom Shakespeare, “The problem of disability is relocated from the individual, to the barriers and attitudes which disable her. It is not the disabled person who is to blame, but society. She does not have to change, society does. Rather than feeling self-pity, she can feel anger and pride,” (Shakespeare, 2006:200). Read more IHR blog posts about the social model of disability here and here.

This has been revolutionary for the empowerment of disabled people, but society at large has not yet embraced this perspective. Ableist bias runs deep and is clearly manifested in the discrimination and exclusion of people with disabilities in society.

Direct Violence

In part due to these fears and biases, persons with disabilities overwhelmingly experience disproportionately high rates of direct violence. Davis writes, “People with disabilities have been isolated, incarcerated, observed, written about, operated on, instructed, implanted, regulated, treated, institutionalized, and controlled to a degree probably unequal to that experienced by any other minority group” (2006: xvi). Per the National Crime Victimization Survey conducted by the U.S. Bureau of Justice Statistics, “the rate of violent victimization for persons with disabilities was at least 2.5 times the rate for those without disabilities.” Disabled women face violent victimization at a rate of 32.8 per 1,000, compared to abled women at 11.4 per 1,000 (Harell, 2017).

The disaggregated nature of the disabled community translates into a preponderance of data for specific impairments. For example, people with cognitive/developmental disabilities are up to ten times more likely to be victims of crime, and often face repeat victimization (Petersilia, 2000). Per the same source, sexual assault rates for women with developmental disabilities are over fifty percent higher than in the general population. This is partially due to the physical vulnerability of people with disabilities but can also be tied to broad assumptions that dehumanize disabled people as well as structural factors that increase vulnerability. A study published in the Journal of Interpersonal Violence found that “structural violence was shown to underpin all other forms of interpersonal violence,” which, they further conclude, increases the vulnerability of persons with disabilities in addition to isolating them from society (Neille and Penn, 2015).

A man in a wheelchair looks back as he wheels down the street. He is wearing a bright pink hat and has a backpack hanging off the handles of his chair. — “The Wheelchair Wanderer.” Source: Edward Allen Lim, Creative Commons.

Structural Violence

Structural violence is more difficult to identify and prohibit than direct physical violence, and its impacts are much deeper. Injustice is built into the structure of our world, which “shows up as unequal power and consequently as unequal life chances” (Galtung, 171). Centuries of global ableist conduct explains why the structural violence of ableism is so deeply wrought, and why it is such a challenge to identify the full extent of its power. I will attempt to explain the roots of ableism, violence as an enforcing mechanism, and the current manifestations of this structure.

Disability cannot be an “other” unless conceptions of the body are expected to fit some standard or ideal physical form. In other words, deviance can hardly be defined outside of its distance from an ideal. Though modern culture is normalized to judge anything by its “average” or “normal” form, these concepts are relatively new. The field of statistics gained steam in the early 19th century, heralded by a group of European eugenicists looking for a way to improve humanity – first by establishing an ideal for mankind, and then acting to eliminate wrongful deviations. “Eugenics became obsessed with the elimination of ‘defectives,’ a category which included the ‘feeble-minded,’ the deaf, the blind, the physically defective, and so on” (Davis, 2006). The hierarchical conceptualization of the body was used to uphold classist structures and elite institutions of power.

These ideas, aided by the popularity of social Darwinism, became prevalent and were applied into political, social, and legal institutions – effectively cementing structural ableism.

Impacts of Structural Ableism

Reproductive violence is a significant type of violence enacted against disabled people on a structural level. Forced sterilization is a major component of this. People with disabilities have historically been forced to undergo sterilization in a variety of countries and time periods, including 20th century America. By 1931, nearly thirty states had compulsory-sterilization laws, aimed at “the insane, ‘feeble-minded,’ sexual perverts, drug fiends, drunkards, epileptics, and ‘other diseased and degenerate persons,’” (Hubbard, 2010:95). The fact that so many states implemented compulsory-sterilization laws is a testament to the pervasiveness of ableism. This foundation was laid in the 19th century but, like many other forms of systematic oppression, is continuously self-reinforcing.

“In the case of disability, [oppression is reinforced] by a circuitry of power and ideology that constantly amplifies the normality of domination and compresses difference into classification norms… of superiority and normality against inferiority and abnormality.” (Charlton, 2006:225).

Unchecked ableism has created a world in which people with disabilities face endless barriers to empowerment and liberation. One major mechanism of ableist structural violence is economic injustice; this, perhaps, has been the most recognizable form of indirect violence for disabled people. Poverty is both a cause and a consequence of disability, forming the disability-poverty circle. Over 27% of individuals with disabilities live in poverty in the United States – nearly double the 12.5% rate for the general population (Wohl, 2014:3). Discrimination in employment, inaccessible urban environments, and lack of accessible transportation make it incredibly difficult for people with disabilities to generate an adequate or stable income. Lack of insurance with overpriced medical bills often exhaust disabled peoples’ resources, while restrictive qualifications for government assistance complicates life further.

“Getting fitted out for a better future.” Source: Kanishka Afshari/FCO/DFID, Creative Commons.

Globally, disabled people, particularly in periphery countries, are “the poorest and most powerless people on earth,” (Charlton, 2006:218), facing a compendium of internal, interpersonal, and structural violence. Political economy is a critical area to investigate here, being the system that informs the hierarchy of wealth/poverty, production/exchange, power and privilege. The political economy has evolved to be ruled by “laws of capital and profit,” (Charlton 2006:218) with no room for deviation, impairment, or mercy.

Conclusion

Persons with disabilities face violence at the psychological/internal level through shame and stigma; at the interpersonal level through direct/physical violence between individuals; and at the structural level through norms that “otherize” deviance, discriminatory policy, and institutions like the international political economy. Violent ableism is an intentional mechanism to reinforce elitist structures of power that benefit “superior” groups and eradicate “inferior” deviants. Ableism is a self-perpetuating cycle that operates through internal assumptions, individual interactions, and structural manifestations in policies and institutions.

Structural ableism will stay rooted in place until positive peace for the disability community is actively pursued at every level – challenging internal bias, practicing social compassion, and preventing future manifestations of ableist structural violence through the destruction of that system and the active, inclusive construction of a better one. Stay tuned to the IHR’s Facebook and Twitter for my next blog on what positive peace for the disability community looks like, and how we can achieve it.

Works Cited

Charlton, James I. “The Dimensions of Disability Oppression: An Overview.” In Lennard J. Davis, Disability Studies Reader, 2nd ed, 2006, pp. 217-230.

Davis, Lennard J. “Constructing Normalcy.” Disability Studies Reader, 2nd ed, 2006, pp. 3-16.

Davis, Lennard J. “Disability Studies Reader,” 2nd ed, 2006. Routledge, Taylor & Francis Group. New York, NY,

Finkelstein, Vic. “To Deny or Not to Deny Disability.” In Handicap in a Social World, edited by A Brehin et al. Sevenoaks: OUP/Hodder and Stoughton. 1981.

Galtung, Johan. “Violence, Peace, and Peace Research.” Journal of Peace Research, vol. 6, no. 3, 1969, pp. 167–191. JSTOR, JSTOR, www.jstor.org/stable/422690.

Harell, Erika. “Crime Against Persons with Disabilities: 2009 – 2015 Statistics.” National Crime Victimization Survey, Bureau of Justice Statistics, 11 June 2017.

Lorde, Audre. “Sister Outsider – Essays and Speeches.” The Crossing Press, 1984.

Shakespeare, Tom (2006). The Social Model of Disability. In Lennard J. Davis (ed.), The Disability Studies Reader, 2nd ed., 2006, pp. 197-204.

Patterson, Cynthia. “‘Not Worth the Rearing’: The Causes of Infant Exposure in Ancient Greece.” Transactions of the American Philological Association (1974-), vol. 115, 1985, pp. 103–123. JSTOR, JSTOR, www.jstor.org/stable/284192.

Wohl, Alexander. “Poverty, Employment, And Disability: The Next Great Civil Rights Battle.” Human Rights, vol. 40, no. 3, 2014, pp. 18–22. JSTOR, JSTOR, www.jstor.org/stable/26408468.

Disability History: Overlooked but Not Forgotten

*Author’s note: I am aware of discourse on person-first language (people with disabilities) versus identity-first language (disabled people). I identify as disabled (chronic illness is a form of disability) and personally prefer identity-first over person-first, but I will use both forms in this blog as to avoid repetition.

“Classroom scene with teacher Kate Hobart showing students how to use mirrors to assist speech-learning.” 1893, Horace Mann School for the Deaf. Source: Boston City Archives, Creative Commons.

The history of disability is asymmetrical. We know that history is always written by those with the power to wield the pen, and the powerful have always trodden on disabled people*. This is why history has most commonly staged people with disabilities as passive subjects — voiceless patients, preserved in history as miserable recipients of medical treatments, cures, and operations. Before the acknowledgement of dis/ability as a socially constructed identity much like gender or race, the dominant framework was the medical model. Impairments were seen from a medical standpoint as afflictions to remove, and “disability history” is full of famed doctors who found apparent solutions to bodily deviance. [Read more about the difference in the medical and social models in this post by graduate student and IHR intern Shane Burns!]

Disability scholars, in the past few decades, have begun to reclaim disabled narratives and frame them in ways that empower and enrich the social matrix of ability.

Like African American revisionists, we strive to reevaluate history with an additional, more critical lens. Before critical race scholars/theorists reasserted historic perspectives to reveal deep-seated racism (alongside the influential Civil Rights and Black Power movements), American society accepted racial discrimination as a fact of life. Ableism can be subverted in a similar way. Modern principles of universal justice and equity equip us to destroy structural injustice wherever it lurks within the depths of unchallenged social praxis. Additionally, revisionism – in disability history, Black history, LGBTQ history, etc. – grants the option to see historically oppressed groups as agents of change rather than sufferers of fate. Obviously, the lingering trauma experienced by oppressed identities cannot be ignored, and it would be detrimental to assume that the same forces of oppression no longer exist. But viewing disabled people as individuals with power, richness, and complexity is an empowering perspective.

Disability activist Stella Young chats with Paralympic medalist Ann Cody. Both women use wheelchairs. — “Stella Young with Ann Cody.” Source: Exchanges Photos, Creative Commons. [Watch Stella Young’s phenomenal TED talk, “I’m not your inspiration, thank you very much,” here.]

In that spirit, this blog will give a brief overview of the disability rights movement, and will highlight some overlooked historical perspectives of persons with disabilities. I will condense the obligatory section detailing the terrible harms suffered by people with disabilities over the centuries : subjugation, abuse, isolation, eugenic extermination, etc. Disabled people have suffered in a wide range of circumstances and continue to suffer today from a toxic mixture of economic, social, political, and cultural barriers. It’s exhausting and demoralizing to read about these things as a disabled person. It also encourages unneeded pity from non-disabled people. Though pity may come from good intentions, it only reinforces dehumanizing attitudes. These attitudes replicate through supposedly innocent interactions like “oh, you poor thing,” and “if I were you, I’d just want to die! I can’t believe you do it!” These sentiments are fairly common reactions from non-disabled people, and they are often said with emphatic sympathy. Yet these are the same attitudes that have stolen agency from disabled people, used their life struggles as perverted inspiration, and used as an excuse to suppress, subject, torture, and extinguish people with disabilities.

Ableism, like many other “isms,” is bound and sustained through micro-level interactions rooted in unconscious yet detrimental assumptions. If you are a non-disabled person, I urge you to reflect before you react to disabled narratives, and consider how your assumptions have been informed by bias. Be sure to actively listen with compassion, react with empathy instead of pity, and always practice validation. It’s okay to have questions, and it’s okay to feel uncomfortable. Sit with your discomfort. Explore it. Decide to challenge it, and you may find yourself with a new perspective.

A group of disabled protesters are staged outside of a healthcare clinic, protesting welfare cuts that have harmed many disabled people in the UK. — “Disabled people protest outside St Mary’s House, Norwich.” Source: Roger Blackwell, Creative Commons.

The Disability Rights Movement

“People with disabilities have been socially dispersed and have lacked both a common identity and the economic and political resources to coalesce into an active and effective movement capable of political action. A rights-oriented consciousness and an adequate organizational apparatus have both been essential to creating the disability rights movement.” – Scotch (1989, p. 4).

In other words, the disability rights movement required a) the collective understanding that disabled people as a group deserved rights and b) the resources to organize and motivate that group effectively.

This effort began to gather momentum in the 1960s, inspired by the grassroots activism of the time (another significant nod to the Civil Rights & Black Power movements). The early disability rights movement also benefited from community programs for disabled people, such as disabled student programs on college campuses. These programs were meant to provide services for people with disabilities, but they also inadvertently connected disabled people.

This was a radical change in society. Most disabled people were physically and socially isolated from one another prior to this movement — individuals with diverse impairments didn’t recognize each other under a “disabled” identity. This disconnect is caused by compounding issues. For instance, an epileptic person has a different set of struggles than a Deaf person or a wheelchair user. In other words, different impairments look and function differently, and it can be hard to conceptualize shared identity between such diverse experiences. Community spaces are often inaccessible, while home environments are isolating. In these situations (especially when surrounded by non-disabled caretakers/family) personal autonomy and dignity can be limited. Without opportunities to share narratives among peers, disabled people had no way of knowing the vast network who shared their experiences. But when this network began to develop, it became apparent that many of us feel the same pain. Together, we could investigate our experiences and find that they’re all rooted in the same institutional structures, harmful biases, and violent enforcement of so-called normalcy.

Three people in wheelchairs face each other while talking. — “Creative Accessibility Mapping Tour.” Source: Andi Weiland / SOZIALHELDEN, Creative Commons.

The first major assertion of collective disabled power came in the early 1970’s. Union of Physically Impaired Against Segregation (UPIAS) was a British group whose radical publications – including Fundamental Principles of Disability (1975) — formed the ideological foundations from which the social model of disability emerged in the early eighties. Penned by Mike Oliver, the social model pointed out that having a disability is not an impairment in itself, but that impairments are created by an inaccessible society. The impairment of poor vision would be disabling if glasses weren’t widely accessible. This shifted the entire paradigm of ability. Everyone experiences limitation and impairment, ability exists on a spectrum, and the social mechanisms that separate “abled” from “disabled” can be torn down. The suffering experienced by disabled people isn’t inherent and should not be accepted. Disabled people can celebrate their own existence, and can demand a better existence for themselves and their peers. Judy Heumann says it much better than I can:

“As long as you believe that your life is a tragedy, you can’t do very many good things with your life. Once you believe that the tragedy isn’t your fault, that it is the failure of the political system to acknowledge your rights as a human being, to be equal in society, that you can as an individual have a voice as part of a group, then you can make a difference.”

Disabled Perspectives in History

Historical records lack the perspective of most disabled people themselves, save for a notable few whose privilege awarded access to education and personal acclaim. Helen Keller was certainly not the first person to be born both Deaf and blind, but her family’s relative privilege granted Ms. Keller access to education and the social positioning to benefit from it. Helen Keller is an inspirational, barrier-breaking figure. That’s not up for debate. But it is noteworthy to mention that her privilege – having a well-connected white family with roots in Southern aristocracy – facilitated her success. Helen learned a variety of communication methods, including ASL, Braille, touch lip-reading, and speaking verbally. She attended college – a notable feat for any woman in her era – and went on to publish a dozen books, helped found several organizations (ACLU, American Foundation for the Blind, Helen Keller International), and even won an Oscar (Helen Keller International).

“Helen Keller taking a speech lesson from Annie Sullivan.” 1890-1895, Horace Mann School for the Deaf records. Source: City of Boston Archives, Collection 0420.047, Creative Commons.

Frida Kahlo is a famous Mexican artist and painter whose disabilities greatly impacted her work. The story of Kahlo’s trolley accident at age 18 is infamous, as well as the physical impact – a broken spine, broken pelvis, and a severe abdominal injury. Prior to this accident, she contracted polio at age 6, and is believed to have been born with spina bifida (Daunton). These experiences are well-known; Kahlo’s legacy has been tainted by pity and morbid fascination with her painful experiences. I believe she should be celebrated in a light that honors her experience. Not only was Kahlo a fierce, vibrant spirit with immense artistic talent, but she broke barriers for other disabled women of color. Kahlo embraced the unique, rich perspective that she had gained through dealing with years of pain, vulnerability, and isolation – channeling it into powerful art. Frida Kahlo unapologetically existed as a disabled woman of color, presenting her body in all its beautiful, sexual, and painful complexities.

A painting by Frida Kahlo features two versions of herself side by side. One is in a white dress, the other in a blue top and green skirt. Both Fridas' hearts are visible, and connected by a vein. — “Frida Kahlo – Two Fridas (1939).” Source: Cea, Creative Commons.

Harriet Tubman is another extraordinary woman of color who was affected by disability. Tubman experienced a traumatic brain injury at age 12 at the hands of a slave owner. Tubman dealt with complications for the rest of her life including severe pain, seizures and/or narcoleptic episodes. Her disabilities may have contributed to her success, as Tubman’s narcoleptic trance-like episodes offered moments of great spiritual impact (Sabourin et al, 2016). A deeply religious woman, Harriet Tubman was guided by her faith to rescue hundreds of slaves over the course of thirteen incredibly dangerous escape missions. Tubman also is the first woman to plan and lead a military operation against the Confederacy – with stealth skills and knowledge of Southern geography, “General Tubman” conducted a successful raid on Combahee River that freed over 700 slaves (National Museum of African American History & Culture).

“Harriet Tubman (far left) with family and neighbors, circa 1887.” Source: Bettman/Corbis, Creative Commons.

Conclusion

The history of disability – as a movement, as individuals, as an identity – is rich, compelling, and intersectional. We should see it as an under-explored reserve of knowledge hidden by suppression, and a perspective to be treasured. Disability history demands to be re-examined and reclaimed in a framework of empowerment. It’s critical for incorporating disability rights into wider society. When you apply modern standards to historical events and figures, a narrative of agency and power can emerge. Simultaneously, it can reveal the despicable mechanisms that create, inform, and enforce oppression. As I said earlier — modern principles of universal justice and equity equip us to destroy structural injustice wherever it lurks within the depths of unchallenged social praxis.

The Last Straw: Ableism in Environmental Campaigns

Recent environmental campaigns have focused on the use of plastic straws as an easy way to eliminate/decrease plastic waste. Harmless in theory, this campaign is actually detrimental to a wide range of persons with disabilities. The mechanics of lifting one’s arm to drink is not universally able; many people with mobility impairment, chronic pain, or other issues are unable to drink without the aid of a straw. This issue extends to a variety of products and items that are labeled as “convenience items” for able-bodied people, but are critical to the health of persons with disabilities.

Convenience items, for abled people, can include things like pre-chopped veggies in plastic cartons at the supermarket or disposable plates and cutlery. Baby wipes are another critical example; environmentally damaging (heard of fatbergs?) but can make an incredible difference in helping persons with disabilities have control over their own hygiene. One may respond to this by saying, “Why can’t they just take a shower?” Unfortunately, shower is not “just a shower” when you have one or more disabilities. It can be a dangerous, isolated environment – a race against your own body’s limits, where even if you win (i.e., don’t pass out, fall, or injure yourself), you still end up exhausted. Baby wipes, despite a terrible environmental impact, allow persons with disabilities to bypass that exhaustion and exert control over their own hygiene. Essentially, convenience items are any item that saves time/energy at the expense of extra waste and often, a higher price tag. “Convenience” is a misleading term though, since these persons with disabilities depend on these products to function.

Let me explain the dependent relationship between those products and persons with disabilities. For those of you familiar with spoon theory, just bear with me for a moment. Spoon theory is a metaphor for the difficulties of persons with disabilities, where spoons represent a unit of energy / ability to accomplish a task. The theory itself is credited to Christine Miserandino, a blogger with Lupus. Able-bodied people, in this metaphor, have an indefinite amount of spoons, while persons with disabilities often wake up each morning with only a few, maybe a dozen. Every activity that seems mundane and forgettable (like putting on your clothes, taking a shower, driving to work) requires the use of a spoon. Persons with disabilities have to be careful and deliberate in every action to conserve spoons for the most important activities throughout the day — otherwise, we’ll be out of spoons before lunch, immobilized by exhaustion or pain.

I say “we” because this issue has personal impact for me. I have Ehlers-Danlos Syndrome (as I’ve discussed in earlier blogs), which is a multi-systemic connective tissue disorder that causes chronic pain and joint instability among hundreds of other symptoms. Yes, hundreds! Cardiovascular, gastrointestinal, immune, respiratory, and nervous system dysfunctions galore. My WebMD history is the stuff of nightmares. It’s an invisible disability, which means that I often appear to be perfectly healthy — even though that couldn’t be further from the truth.

Due to my joint instability, I run the risk of painfully dislocating my shoulder every time I lift my arms. Lifting a heavy water bottle and tilting my head back can leave lingering nerve pain for weeks, depending on the severity of my condition that day. Chopping vegetables can make my hands, wrists and shoulders hurt for days, so pre-chopped packages of veggies save me at least one metaphorical spoon. Even getting a glass of water can be a labor-intensive process. If you have indefinite spoons, you may not even notice the effort involved. What feels like a quick trip to the kitchen for able-bodied people can be actually an arduous, multi-step experience. Standing, walking, lifting my arms, filling a cup with water, opening the freezer for ice — there are deliberate mechanics requiring strength and mobility that go into each of those tasks. Those mechanics are impossible for some and exhausting for many others.

“Sara and Nils Wedding Spoons.” Source: Marcus Metropolis, Creative Commons.

So grabbing a water bottle and a straw can save me the spoons that would be wasted in the process of making a glass of water. And no, I’m not exaggerating. Every single step is intentional for persons with disabilities, because our mobility is not a given. Our daily functioning is a result of years of grueling practice. We build routines that we depend on, filled with little things that are just “conveniences” to other people, but absolutely crucial for us. I have said before that my body operates like a stick-shift vehicle, while most people have the convenience of having an automatic. Able-bodied people are so used to having an automatic that they assume it feels that way for everyone, but any action or movement requires conscious, concentrated effort for people like me who are the human equivalent to a 1971 Ford Pinto (exploding gas tank included).

With that in mind, it’s no wonder that persons with disabilities become so frustrated when their “convenience” items are attacked. With my environmentally conscious friends, I often feel alienated and shamed for my use of plastic bottles and straws. I wish I did not depend on those items, but should people with disabilities have to choose between their immediate, personal health or contributing to global plastic waste? The fact that we have to even make that choice is appalling. Persons with disabilities genuinely care about the environment but we have an obligation to ourselves as human beings to secure our personal wellbeing over anything else.

A man in dark clothing crosses a city street with the aid of a walking stick / mobility device of some sort. — “Streets for all.” Source: Mathias Ripp, Creative Commons.

What about alternatives to plastic? That’s a great question, but it comes with some complex answers. Biodegradable products are typically less accessible, more expensive, and rarely offer a genuine replacement for their plastic predecessor. Biodegradable baby wipes are difficult to find and can be seven times more expensive than regular baby wipes. After a quick search of popular shopping sites, I found that regular wipes costs about 1 cent per sheet, while the most popular biodegradable option costs 7 cents or more per sheet. Disability activist Penny Pepper points out the issues with biodegradable alternatives in an opinion editorial for the Guardian.

Take for example, paper straws. According to Pepper (who is a published author, punk-rocker, and wheelchair burlesque dancer), paper straws lack flexibility, which is critical to achieve a safe drinking angle. The angle of one’s straw is important when you are unable to hold a cup yourself, or need someone to hold it for you. Metal and bamboo straws have the same issue, and are often too wide, which is not ideal for people with biting issues. Reusable straws run the risk of collecting bacteria, which is dangerous when autoimmune disorders are a factor.

A homeless man with disabilities sits on the ground with his dog. His wheelchair is next to them, along with all his items and an American flag. — “Tommy & Scrappy, Jensen Bridge, Houston, Texas 1207021123BW.” Source: Patrick Feller, Creative Commons.

Even if all of those factors are somehow minimized, cost is still an issue. Most persons with disabilities are already at a disadvantage economically. “Research consistently finds that disabled people are less likely to be in employment than non-disabled people and when employed they receive, on average, lower pay” (Equality and Human Rights Commission). In the most recent annual compendium of national disability statistics, individuals with disabilities had a poverty rate of 26.7% – considerably higher than the national poverty rate of 11.6%. Not only that, but the cost of living with disabilities is substantially higher. Accessible housing is difficult to find. Medical expenses can be astronomical. Adequate health insurance can be hard to come by without a full-time job, and full-time jobs are often impossible for persons with disabilities. With all that in mind, persons with disabilities have little room to afford higher-priced products.

I have personally faced harsh disdain from environmental activists on the wastefulness of the above products. Yet, for people like me who depend on those products, it feels like a knife in the gut to be shamed for choosing your own health over environmental welfare. That knife twists when it is made apparent that the health of persons with disabilities comes second to the health of marine animals. I care about sea creatures just as much as the next person does – maybe even more – but hear me out: the rights of persons with disabilities should be prioritized over the rights of sea turtles.

A sign that says "Drowning in Plastic" is hung on a fence surrounded by a string of empty plastic water bottles. — “Marrakech Climate March.” Source: Takver, Creative Commons.

So how do we bridge this gap? How can persons with disabilities engage in environmental activism without compromising their own health? The burden is not on us. Rather, it falls on the leaders of environmental campaigns as well as product manufacturers. Persons with disabilities already do what they can with the products that are available to them, and daily life is enough of a struggle. Most of us actually want to be included in environmental causes, but it has to fit into our daily spoon allocation. The solution? Make environmentalism more accessible. Manufacturers create the problem with the mass production of environmentally damaging products; individuals and environmental NGOs shape the narrative, focus, and reaction. Both ends must commit to an inclusive paradigm shift.

Environmental NGOs and their leaders must do a better job at listening to persons with disabilities in order to create a more inclusive approach. The focus of environmental campaigns matter – instead of demonizing plastic straws, find another plastic product that is more universally able to boycott. Remember that consumer activism isn’t limited to boycotting; try buycotting instead, which encourages consumers to spend their dollars on a company that shares their concerns and values. If you have the financial flexibility, spend a few dollars more on a sustainable product over a cheaper, less responsible option. You can read more about strategies of political consumerism here in a journal article by Lisa Neilson.

Alternatively, encourage the innovation of products that persons with disabilities depend on. If you have the skill and ability to develop an environmentally conscious product to genuinely replace items like plastic straws and baby wipes, do it! We can’t just give up our dependence on those items, but most of us would gladly make a more environmentally responsible choice if it were both available and affordable. Ideally, the environmental movement will develop a commitment for inclusivity so that persons with disabilities can fully engage without compromising their integrity. After all, we want the world to be better, too. We need the world to consider the human dignity of persons with disabilities as a co-requisite for environmental justice.