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Recent Attacks to the ADA and Accessibility
Unless you are involved in the disability justice movement, it is possible that you have never heard of HR 620, the ADA Education and Reform Act of 2017. The idea of pushing a bill that attacked the Americans with Disabilities Act was not new, having most recently been introduced in 2015, but past attempts didn’t get much traction. But in 2018, times have changed, and HR 620 got enough steam to attract 108 co-sponsors, including Missouri’s own Jason Smith (8th district in the southeast), Blaine Luetkemeyer (3rd district, which includes Jefferson City and St. Louis), and, of course, Billy Long (7th district, from right here in southwest Missouri). As Sara Novic with NBC News summed it up, “On Feb. 15, while the country had its eye on allegations of Russian election meddling and the senseless murder of 17 people in the Parkland school shooting, the House was quietly gutting the Americans With Disabilities Act, passing H.R. 620 with a vote of 225-192.” (https://www.nbcnews.com/think/opinion/gop-s-h-r-620-will-gut-americans-disabilities-act-ncna850261 ) The bill was received in the Senate on February 26, 2018.
Whenever I encounter something like this, whether it is a piece of legislation or a bad joke, I ask myself, who gains what? What does this have to do with how society is constructed? What does this have to do with who has power? What does this say about our values and aspirations as a society? Since 1990, the ADA has given at least some legal leverage to people with disabilities to pursue access to public accommodations. While far from perfect, as anyone navigating inaccessibility in U.S. can tell you, the ADA plays an important role in getting American society used to the idea that it should be accessible to everyone. But HR 620 reduces that leverage. Instead of simply filing a suit, you first make a written complaint to the business owner who violated the ADA. The owner has 60 days to acknowledge the complaint, followed by 120 days to take action. During this time, the bill only requires “substantial progress” be made, a hollow, subjective phrase that will certainly be used to postpone compliance. After all, how do you measure “substantial progress”? Only then, after six months, could a suit be filed. In other words, HR 620 introduces a waiting period for folks to pursue their civil rights.
I don’t know about you, but I got tired just reading that list – how many people do you think will simply give up on justice because there is simply not enough time, energy, and resources to do all this extra work? And are we providing accessible copies of the ADA to all people with disabilities so that they can educate violators? Because this is one of the core criticisms of HR 620: it shifts the burden onto the people who are already being discriminated against. After all, the justification for the bill is:
1. it prevents money awards, even though no monetary awards are allowed under Tittle III of the ADA, and monetary awards only are available under certain state laws, which wouldn’t be changed by HR 620;
2. it limits so-called frivolous lawsuits, even though courts already have the power to deal with serial litigation or fraudulent claims; and
3. it helps businesses understand ADA standards, even though they have had 28 years to learn, and even though it puts the burden on the victims to educate their oppressors on how to behave with basic human decency. (more info at: https://dredf.org/hr620/overview-of-concerns-with-h-r-620/ and https://www.aclu.org/other/hr-620-myths-and-truths-about-ada-education-and-reform-act )
The basic gain here is for businesses that view ADA compliance as a financial liability and are looking for loopholes, because this should be basic stuff. No one should have a difficult time understanding, for example, that an accessible bathroom stall has to be big enough to maneuver a wheelchair, that emergency rooms and police stations should have access to a sign language interpreter, or that elevators should be equipped to beep or speak at each floor. As a society, we should be actively doing more, not conniving to do less.
If we are on the side of justice, HR 620 invites us to be honest about the failure of our society to take seriously the experience of discrimination on the basis of disability. When we place the burden of compliance on the victims of injustice, what does that say about us? It says we are not listening, because, if we were, we would know that there is an enormous amount of suffering and oppression that goes on every day, experienced by millions of people in the United States who cannot access places, services, resources, and people. Or it says that we do not care, because these conditions exist simply because we have refused to act, because our society values profit over people and evaluates people’s worth by their financial productivity. To put it plainly: we have made a society where it is more important for a business to make a profit than for us to value and care for each other. We have more than enough resources, we just have not had the will.
Disability is Socially and Politically Constructed
I use the word disability begrudgingly, because I think the way it is commonly used shifts the emphasis away from society and onto the individual, and shifts our attention away from aspirations such as common humanity and onto an imaginary rugged individualism, and away from justice and onto profit. It’s also a confusing word, because its meaning changes according to time, culture, and circumstance.
For example, A.J. Withers, writing in Disability Politics and Theory, examined six main models and listed 21 additional models that have been used in discussing, pathologizing, and legislating disability. (3) To complicate matters, most of us haven’t spent a great deal of time examining our own thoughts and assumptions about disability, making it more likely that we’ll simply accept the rampant disablism all around us. As a personal reflection, we can each unpack our own assumptions and attitudes about disability. We can’t effectively resist unjust systems that we do not understand.
As we do so, we’d do well to remember that humans are social organisms. At almost every moment of our lives, we are depending on and trusting other human beings to survive. As Withers pointed out:
"What is considered normal or non-disabled is constructed around certain kinds of people, while leaving others out. ... No one is actually independent. This is a myth perpetuated by disablism and driven by capitalism - we are all actually interdependent. Chances are, disabled or not, you don't grow all of your food. Chances are, you didn't build the car, bike, wheelchair, subway, shoes, or bus that transports you. Chances are you didn't construct your home. Chances are you didn't sew your clothing (or make the fabric and thread used to sew it).” (109)
Disability and Power
This point is essential if we want to understand how disablism works, both in our wider society and in our minds. Disablism shares this in common with other oppressive systems: it insists on defining what is normal and then uses that definition to elicit either pity or disgust for anyone who doesn’t neatly fit. It’s a powerful tool to dehumanize people, and dehumanized people are easier to ignore or exploit. This is what oppressive systems do to marginalized groups, on the basis of things like skin color, ethnicity, gender, sexuality, age, ability, or class. If you think someone is bad in some way, it’s easier to overlook, or even justify, abusing them. If you think someone is pitiable, it is easier to dismiss their value as a human being and, with them, their criticisms of unjust systems. Disablism, then, is a justice issue, and it intersects with other forms of oppression, since many people facing discrimination belong to more than one marginalized community. As examples, consider this:
• approximately 26% of non-institutionalized persons with a disability in the United States in 2016 were also “living below the poverty line” (http://www.disabilitystatistics.org/reports/acs.cfm?statistic=7 ).
• Three in 10 native people and 1 in 4 black people in the United States have a disability. (https://www.cdc.gov/ncbddd/disabilityandhealth/materials/infographic-disabilities-ethnicity-race.html )
• Statistics have revealed that there are “Higher rates of disability among lesbian, gay, and bisexual adults” (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3490559/ ).
• And, in what is no surprise for most of us in the transgender and non-binary community, a 2016 study found that participants who were diagnosed with Autism Spectrum Disorder were also “7.76 times more likely to report G[engder]V[ariance]” than the control sample. (https://www.liebertpub.com/doi/10.1089/trgh.2015.0007 )
• My own neurodivergence aside, there are also still plenty of people who understand diverse gender identities and sexualities themselves as evidence of mental disability, and would seek to pathologize and exclude us on that basis.
In each of these cases and more, disability is used to further dehumanize us with the tyranny of the so-called normal. Whenever this dynamic is at work, it is important to understand how those labels are being used to control people and accumulate power. In the United States, at least, “normal” is white, male, straight, cisgender, well-educated, financially stable, young, and healthy. The more of those boxes you check off, the more likely you are to have access to and control of power and money. Disabled folk living beyond society’s expectations make great stories to be consumed for inspiration, stories that can be packaged and sold. But disabled folk demanding equality and accessibility threaten those who insist on an socio-economic system that disregards the well-being of all its people, that prefers profit over justice. Those who insist on being heard are demonized and dismissed, such as the 17 activists recently arrested for chanting for their civil rights in the House chambers, while our legislators still passed HR 620. (More info at: http://www.truth-out.org/news/item/43570-disability-activists-crash-congress-to-stop-a-bill-that-would-undermine-their-civil-rights )
Our apathy towards this kind of dehumanization and injustice relies on us not noticing or caring that we are being manipulated against our personal and collective well-being. Returning to Withers, in Disability Politics & Theory, they wrote -
“The difference between the needs that many disabled people have and the needs of people who are not labelled as disabled is that non-disabled people have had their dependencies normalized. The world has been built to accommodate certain needs and call the people who need those things independent, while other needs are considered exceptional. Each of us relies on others every day. We all rely on one another for support, resources and to meet our needs. … This interdependence is not weakness; rather, it is a part of our humanity." (109)
Two Pathways for Change
This insight points us to two closely related pathways. First, we need to normalize accessibility. In both public and private, we can ask – what does this space assume about its users? Who is included? Who is left out? We cannot anticipate every need, because humans are incredibly diverse. But we can communicate that we value every person and want to include one another. For example, a friend pointed out that, even though fewer blind people are using braille today, posting braille signage does not only benefit those who read braille. It also tells everyone there that this is a community that includes blind people. We can be creative about how we communicate these values, such as hosting ASL classes or setting aside sensory-soothing spaces. Normalizing accessibility makes us more aware of each other’s needs and more inclined to support each other.
Second, we need to normalize interdependence. We are culturally trained to understand interdependence as a weakness, and people who need accommodations are perceived as weak, often a burden. People refuse to help one another, for fear of taking on too much. And people who do support each other are seen as something to admire, the wonderful exceptions. We’ve got this backwards. Supporting one another should be normal, not a burden, and not an inconvenience. We all need other humans, and cooperation works for our species. Especially if you are not labeled with a disability, consider, in any given moment, how much must be going right, how many humans had to work together, to make that moment come to be. Think about how many humans you depended on just to get to this gathering service this morning – shelter, food, clothing, transportation, energy, technology, pharmaceuticals, and a host of other things! Then think about what it would be like if the people and things you depend on were suddenly considered exceptional. A good friend calls people who aren’t labeled or don’t identify as disabled, TABs – temporarily able-bodied. That reframing can be useful in re-training awareness, and we can go further. Disability is not about bodies as much as it is about society, about those we collectively choose to exclude. Disability is a social construct, to our shame. But interdependence is an essential and wonderful “part of our humanity."
As we normalize accessibility and interdependence, we’ll also find ourselves changing in other ways. We’ll be listening and learning when someone has a need we do not yet understand, rather than dismissing them outright or justifying our unwillingness to adapt. We’ll be rooting out the internalized oppression and dominance, including the assumptions and perceptions we have about disabilities, a process I’ll be talking about more next week. We’ll be advocating alongside folk who are opposing legislation like HR 620, and we’ll be supporting organizations and activists with our time, energy, and money. We’ll become more aware of and grateful for the humans and technologies we depend upon in our own lives, and more welcoming and supportive of one another. It will not be easy, because our society has set things up to be difficult, but it will be worthy of our common humanity and a source of justice, peace, and joy:
In a society where everything is measured in dollars,
it’s not surprising that people are reduced to profits,
our worth tethered to our productivity.
So we grieve together at how easy it becomes
to go along with these lies,
and let them take root inside and around us.
We desire and commit to value ourselves and others
according to the standards of human dignity,
according to a vision of mutuality and equity,
according to the wisdom of interdependence and love.
