During our last episode of Demand Our Access, we had a brief discussion of disability equity and disability justice. Since so much of how I see the ADA and the other laws we have and will cover through the Demand Our Access project is influenced by how I view disability equity and disability justice, I decided we should discuss those important concepts in this space. Since Disability equity and disability justice are both heavy topics, I have decided to split them into separate episodes. I’m hoping that by splitting them, there will be time for some thoughtful discussion. So, this episode will focus on disability equity.
Nothing About us Without Us
Nothing about us without us is a critical piece of disability equity. It means nothing that really impacts the disability community should happen without input from people with disabilities. I would add to the concept of nothing about us without us and say that nothing really impacting the disability community should be decided by people without disabilities.
Equality and Equity
- Equality means each person and group of individuals is given the same amount of resources and has the same opportunities.
- Equity recognizes that each person or group of individuals has unique circumstances and allocates exact resources and opportunities necessary to provide for equal outcomes.
Examples of Equality
- A school district spends $20,000 per student.
- A government holds a public meeting and provides everyone in attendance the same print agenda and meeting materials.
- A bank offers all of its customers the opportunity to use an app to pay bills.
Under each of the three above examples, everyone is supposedly being treated exactly the same. Everyone has been provided the same resources. Everyone has been afforded the same opportunities. In these three examples, the school district, government, and bank are not making any allowances for the unique circumstances of different communities.
Examples of Equity
- A school district spends $25,000 per student in schools where more children are living in poverty and $15,000 per student in school districts where families are wealthy.
- A government holds a public meeting in an accessible venue and provides the agenda and meeting materials in print, large print, and accessible electronic formats.
- A bank allows all customers to pay bills through an app it has developed to be accessible to users of assistive technologies.
In these three examples, the school district, government, and bank took steps to recognize that not all people have the same circumstances. Here, these entities understood that simply providing everyone what on the surface seems like the same resource and opportunity actually disadvantages many people.
The school district recognized that wealthy families could do more for their children than families living in poverty and provided certain schools more money to help reduce the funding disparities that have always existed in schools located in neighborhoods that aren’t wealthy.
The government spent additional money ensuring the venue was accessible to people with mobility disabilities and to provide materials in alternative formats.
The bank spent additional money having its app coded for accessibility and having the app tested by native users of assistive technologies to ensure they have the same usability experience as those who don’t use assistive technologies.
Summing up Equality and Equity
As you have seen, equality ignores the reality that society has always treated people differently. Equity, on the other hand, recognizes the reality of ongoing oppression and requires additional resources and opportunities be provided to historically oppressed communities to provide more equitable outcomes.
The key thing to remember about the equality verses equity debate is that equity focuses on the outcomes produced, not just the resources provided. For our purposes, a societal focus on disability equity instead of equality would force society to admit that people with disabilities are far more likely to live in poverty, be undereducated, and unemployed or underemployed than are people without disabilities. In an equitable society, we would realize that striving for equality of resources and opportunities is simply not working. In an equitable society, we would realize that to make up for the centuries of discrimination and oppression faced by disabled people, government would have to direct far more resources to the disabled community and deliberately provide additional opportunities to the disabled community.
In my view, America would be a far better society had the Fourteenth Amendment been designed to ensure equitable outcomes under the law than equality of opportunity under the law. A focus on equitable outcomes would have forced us to honestly examine and reckon with the lack of similar outcomes so often afforded people of color, people with disabilities, women, and more.
Ableism is the intentional or unintentional discrimination or oppression of people with disabilities.
With this definition of ableism, we are acknowledging that discrimination against and oppression of people with disabilities can occur whether it is intentional or not. Again, we are focusing on the outcome of what happened. We are not looking to an individual’s personal intent or the intent of society. We are simply saying that any discrimination against or oppression of a disabled person or a community of disabled people constitutes ableism.
Life experience has taught me that most ableism is originally unintentional. Sadly, most people aren’t aware of the ADA and their responsibilities to the disabled community under the ADA. When I can’t pay my water bill because the water company’s website is inaccessible, I am being discriminated against by the water company because of my disability. The water company didn’t intend to discriminate against me as a disabled person. But the water company unintentionally discriminated against me as a disabled person when it failed to follow the ADA and never imagined how I would pay my water bill. But when I point out the inaccessibility of the water company’s website and the water company does not make its website accessible, the line between intentional and unintentional discrimination gets thinner.
Understanding that someone or an entire society can be ableist whether they mean to be or not is critical to reducing ableism and the discrimination and oppression resulting from ableism. We can no longer allow individuals or entities to claim that our discrimination and/or oppression was accidental. The ADA has been law for almost 33 years. The Rehabilitation Act of 1973 has been law for 50 years. Even Section 508 of the rehabilitation Act of 1973 (mandating accessible electronic content be provided by the federal government) has been law for 25 years. Until we stop allowing people and entities to get away with ableism, whether intentional or not, we will continue living in a society that is overwhelmingly ableist.
Ableist language is an important concept because words really do matter. The words we use and the ways they are understood have a lot to do with how disabilities and people with disabilities are viewed. The most important thing to remember is to say what you actually mean to say.
In the sentence ‘His advice fell on deaf ears’" the meaning is not that the person couldn’t hear the advice being offered. The expression literally means that the person receiving the advice wasn’t smart enough or interested enough to consider the advice. In other words, the expression compares the inability to hear with being less intelligent.
In the sentence ‘You would have to be blind to not see how much money government wastes’ the expression is indicating that blindness prevents blind people from understanding how much money is being wasted by government. I think we can all agree that eyesight is not a requirement to understand government wastes money.
Words like lame, cripple, crazy, and bipolar are often used to describe things that have nothing to do with disability. They are regularly used to be insulting or describe someone’s individual, temporary feeling of inadequacy.
Internalized ableism is the way that an individual absorbs and applies the beliefs and moral judgments of the dominant ableist culture, at a subconscious level. In other words, it’s how we absorb and apply the beliefs our society has about our disability and people with our disability and apply them to ourselves and others with our disability.
Sadly, we all know blind people who believe blind people cannot work, raise children, graduate from college, and/or find love. When someone believes that our disability prevents us from doing things we can obviously do, that person has internalized ableism. Instead of knowing discrimination and oppression are the reasons why many of us do not achieve what many people without disabilities achieve, they believe what society says is possible for us as blind people. Even though they are disabled, their internalized ableism results in them believing we are not capable. When confronted by the relative successes of other people with disabilities, they dismiss that success as some people are just better.
Models of Disability
The models of disability are important to our understanding of disability equity, because they provide different perspectives as to how different people view disability and those of us with disabilities. While there are many models of disability, I’m going to cover what I believe are the five most common models of disability.
A person’s disability is their individual problem. People with disabilities need to accept there are things we cannot do because we are disabled people.
Access is a basic human right. Based on principles of human rights, the rights model recognizes that disability is a natural part of human diversity. People with disabilities have the same rights as do people without disabilities. Society must not use disability as a reason to deny people rights.
Society is the problem. People have disabilities, but the discrimination, oppression, and exclusion faced by people with disabilities is not an inevitable result of having a disability. The discrimination, oppression, and exclusion of people with disabilities results from the way society is run and organized.
Disabled people are to be pitied. People without disabilities should provide charity to people with disabilities. This approach often leads to people without disabilities being inspired when those of us with disabilities do ordinary things.
A person is defined by their ability to work and by how much they can produce. The economic model also assesses the impact disability has on the economic consequences for the individual, the employer, and the state. It considers the economic consequences with no regard for the realities of discrimination and oppression.
Identity First or Person-First Language
In most written communications and in many conversations, people use what is called person-first language. Many laws, including the ADA, are written in person-first language. Person-first language simply means you put the person first. So, you say people with disabilities or people who are blind.
Identity-first language is far less common, but is preferred by many people with disabilities (including me). When we use identity-first language, we change the focus from the person to the person’s relevant identity. So, we say disabled person or blind person. I prefer identity-first language when I’m discussing disability, because I know I’m a person. I know I’m entitled to inclusion, and I know how to get the rights I’m entitled to getting. But I’m just as proud of being a blind person. Blindness is not something that is an add-on to me as a whole person. Blindness is a fundamental part of who I am as a person. Blindness has had a profound role in shaping me as a person. Simply put, I’m proud to be blind. This may be surprising to some, but I’m glad I’m blind. I know I’m a better person because of what blindness has given me the opportunity to learn. So, I want my blindness to be first when I’m discussing my disability.
In many places, including the ADA, the word “impairment” is used to describe disabilities. Many people with disabilities, including me, do not consider ourselves impaired. Sure, I cannot see. But I’m highly functional. While I acknowledge the weaknesses I know I have, and while I’m open to learning about weaknesses of mine I’m not yet aware of, I am not impaired. People who aren’t as smart as me do not have to describe themselves as impaired. People who cannot do as many miles on the elliptical as I can do aren’t required to say they are impaired. When someone can run faster than me, I’m not required to describe my lack of speed as an impairment. So, I’m not going to say my lack of sight has left me impaired. I’m blind. I’m not impaired.
The final thing I want to cover is the truth that even the word disability was created by nondisabled people. The word disability, because it was created by people who aren’t disabled to describe those of us who are, focuses on the perceived negativity of having a supposed disability. Disability, like disrespect, is a negative word. But the word disability is now such a part of regular conversation that there is little chance of the disabled community replacing the word disability with a word that is not intended to be negative.
I’m guessing some of these concepts and ideas may be new to most of you. But I hope that even if you don’t agree with something I have shared here, you will consider what I have said. I don’t want or expect everyone to agree with me. I have my own personal, strong reasons for viewing disability equity through the lens in which I view it. I truly believe that if we as the community of disabled people understand the need to champion equity over equality and if we embrace our status as disabled people we will be far more effective in creating a society that is more accessible to and inclusive of people with disabilities than is our current society. Simply put, if we don’t take open pride in ourselves and if we fail to acknowledge the strengths our disabilities have given us, most people without disabilities will never fully acknowledge our abilities and appreciate our value. How the world sees us as a community and how the world sees each of us as individuals depends exclusively on how we see our community and more importantly how each disabled person sees them self as a disabled person .