Last week, a friend shared a local news story from back home about a group of people trying to band together and solve a problem facing their neighborhood. The problem: multiple renters living in the same home in a neighborhood that is only zoned for single-families. The complication: the multiple renters in question are people with disabilities who receive 24/7 care from an agency.
This situation is one familiar to many individuals with disabilities, or families with members with disabilities. Instead of trying to pick apart what is problematic about the neighborhood’s position (there is a lot) I want to try and zoom out and look at the situation as broadly as I can. As Thoreau said,
There are a thousand hacking at the branches of evil to one who is striking at the root.
I don’t want to get lost in the weeds, or branches, of this situation, as important as that is. Instead, I want to try and strike at what I see to be the root of the problem.
The impulse felt by the neighborhood, to rid their community of those they feel are different from them, is relatable. We naturally gravitate towards those we think of as part of our in-group – those people who are, “just like us” – while simultaneously removing ourselves from those we think of as outside of our group – those people who are, “not like us.”
We do the same thing when it comes to people with disabilities. We tend to see those with disabilities as different from us. Therefore, we create two distinct groups of people in our collective social psyche – those with disabilities, and those without disabilities.
But what if this isn’t at all reflective of reality, and actually contradicts reality?
Pausing for a moment, I want to address some terminological issues. From the Americans with Disabilities Act:
An individual with a disability is defined by the ADA as a person who has a physical or mental impairment that substantially limits one or more major life activities, a person who has a history or record of such an impairment, or a person who is perceived by others as having such an impairment.
This definition of disability operates within what is called the individual model of disability. In this model (sometimes referred to as the medical model) the individual themselves is the site of the disability. A person is disabled. Contrast this with the way disability is defined according to what’s called the social model of disability:
The social model of disability says that disability is caused by the way society is organized, rather than by a person’s impairment or difference.
In this model, it isn’t the individual who is disabled, but it is society that is dis-abling. Under this model there is a difference between impairment and disability. An impairment (such as being blind, or not being able to walk) is only a disability if the organizing structures of society prevent the individual from participating fully and equally in society. For example, if a person in a wheelchair cannot enter a building then that person is dis-abled by the lack of a ramp or other accommodation. Their impairment, however, remains regardless of the presence or absence of a ramp.
Understanding the difference between a disability and an impairment is crucial for dismantling our prejudice toward persons with disabilities.
Most of us conflate these two terms and ideas – we assume that anyone with an impairment is automatically disabled, and have become so confused by this that there is no functional difference between the two. This misunderstanding helps in the (mis)formation of the in-group/out-group distinction mentioned above.
… [T]he experience of disability is an ever-present possibility for all people. A greater than 50 percent chance exists that an individual who is currently able-bodied will be physically disabled, either temporarily or permanently.
– Nancy Eiesland
We are, all of us, temporarily able-bodied, able-minded, in short: able. We somehow believe that all of us have the same unlimited potential for ability and that only if and when something happens to us, whether at birth, in an accident, because of an illness, or in old age, will we be limited in our abilities. Other than that, we have the potential to do anything. But in truth, we aren’t capable of unlimited feats either mentally, physically, or otherwise. We are, all of us, limited in our capacities.
But this truth gets lost when we confuse disability and impairment. We believe that being disabled means being limited the same way that being impaired means being limited. In actuality, all of us will experience, if we don’t already, some impairment that limits our abilities. The difference is, very few of us are actually dis-abled by those limits.
We cannot recognize that these limits are inherent to our being – they are inextricably part of being human. So our distinction between those with and those without disabilities is wrong if we understand disability and impairment to be the same thing. The difference is a matter of degree, not kind. Some are more limited than others, but all are limited.
However, it is my contention that the in-group/out-group distinction between those with disabilities and those without disabilities is actually correct as long as disability in this instance is understood to be those structural, societal forces which dis-able individuals and communities. Just because someone is limited or impaired does not mean they are disabled.
Coming back to the neighborhood in the beginning, there are two important points I want to make. First, it is important for the community to recognize that these women, though developmentally disabled and requiring constant care, are still human beings. They are not in a different group or category from the rest of the neighborhood. The impulse to remove “those” who are different from “us” is misplaced – they are like us.
The Other has a face, and it is a sacred book in which good is recorded.
Stop! There beside you is another person. Meet him. Look at the Other’s face as he offers it to you. Through this face he shows you yourself.
– Emmanuel Levinas
Second, it is important for the community to recognize that these women are in a different group or category. The community’s inability to confront the reality of their own limited, finite nature, and their discomfort in acknowledging the similarities between themselves and their neighbors has led to the disabling of those women. Those women are not disabled in their nature, but are disabled by their neighbors and community.
By conflating disability and impairment these neighbors simultaneously (1) miss an opportunity to be neighborly by showing love and kindness to people who are like them, thereby removing the disabling barriers these women experience, and (2) reinforce the disabling barriers these women experience by refusing to see how they themselves are limited in their nature, and therefore continue to reject those who are perceived to be different from them.
While I believe it is important to acknowledge the similarities between persons with disabilities and persons without disabilities, this should not be done at the expense of taking real, concrete, political action on behalf of and alongside those persons with disabilities. Saying, “we are all limited in our nature” does not correct the systemic barriers preventing persons with disabilities from living full, active lives in their community. Nor should it.
I am calling for communities such as this to experience the full weight of this reality, to confront the truth of their limits. Then, and only then, can communities such as this begin to see the ways in which they have been implicit in the disabling of others, and take steps to correct it. But the tension between these two truths – that we are all limited, and not all of us are disabled – must never collapse into one of the other. Somewhere in this tension is where justice can be found.