Disability Pride Month challenges the invisibility of individuals with disabilities. It encourages us to see and witness each individual as more than the body they inhabit.
“My advice to other disabled people would be, concentrate on things your disability doesn’t prevent you doing well, and don’t regret the things it interferes with. Don’t be disabled in spirit as well as physically.” -Stephen Hawking
As the nation celebrates its independence, let's make it a point to honor our interdependence. Let's pay attention to the ways in which we lean on one another. Let's examine the ways in which independence is a myth, the ways in which any single one of us depends on a community in order to be and become our full selves.
The purpose of Disability Pride month is not to sugar coat the experience of moving through life with a disability. It is to raise awareness about the challenges of doing so. This month, we have the opportunity to set an intention to foster openness and understanding regarding the spectrum of ability. We have the chance to band together to advocate for greater representation of this spectrum, as well - in positions of power, in books and media, in everyday life. Together, we can build a more inclusive version of what it means to be fully human and deeply valued in one's full dignity, regardless of ability status.
Why engage in this work? Because every single one of us has limits. We are never always able. We depend on others in nuanced and variable ways each day. In our culture, we tie the experiences of being able-bodied and independent together, and we laud them both. However, these states are impermanent. We are all mortal, and therefore we are going to wrestle with the experience of becoming debilitated at some point in our lives. As long as we hide from this reality, we doom ourselves to an aging process, illness, or ending that feels dehumanized and isolated. Humans do not thrive in loneliness; and yet, when we believe we must be independent in order to have value, loneliness is where we land. Disregarding our limitations and needs simply leads to disconnection from ourselves and others.
"I know this is drastic. But sometimes, I wish my limb was amputated. Then, people would understand that I am in pain. I wouldn't have to explain."
There are nuances to the experience of disability. When we examine abilities on a spectrum, whether these are cognitive, physical, or otherwise, this helps to understand the lived experiences of those working with varying levels of ability.
"Passing" is a term that identifies those from a minority group that are perceived as members of a dominant group. In the context of gender, for example, this could refer to someone who identifies as nonbinary, however is perceived by others as cisgender. When it comes to race, people of color with lighter skin tones may have been socialized or encouraged to "pass" as white. Often, the term "passing" is associated with privilege. The more similar an individual looks or behaves to those of the dominant/majority culture, the more opportunities or privileges they can access. This can lead passing individuals to feel out of place - not fully accepted within their own cultural group, and not a member of the dominant group either.
When it comes to disability, the term "able passing" catches some of the nuance of the ability spectrum. Depending on whether a disability is overt and visible, such as an amputated limb, vs. internal and/or invisible, such as the experience of chronic physical pain in the absence of a visible injury - a person's experience of illness and disability may be very different. An able-passing individual may not look as though they have a health problem or condition, and as such may be offered opportunities similar to those offered to fully able-bodied individuals. That said, they may still struggle to have the "spoons" to keep up with their fully healthy and able-bodied counterparts.
"I want the task to be offered to me, one way or another. I can say no. Or, I can get accommodations. Or, I can just do the task. I know myself best, so I get to choose."
Meanwhile, those with visible disabilities may be seen as less capable than they truly are. The term "microaggression" refers to discriminatory slights or insults made towards members of a minority group, by members of a majority group. Microaggressions are often not ill-intended, but are the results of assumptions and ignorance regarding the lived experiences of others. These statements or actions are often indirect or subtle, however still reflect discrimination. An example might be a manager at work offering certain tasks or projects only to able-bodied individuals. This could stem from various perceptions and motivations, such as the assumption that the person with a disability cannot perform the task, or a desire to support this person by making their life "easier." Regardless of the intention, this is still an act of discrimination.
Those experiencing illness and disability, like those in other minority groups, bear the burden of balancing the wish to be fully understood with ease, with the work of explaining their lived experience and advocating for their needs - often despite significant communication barriers, as shown in the short film, "The Silent Child," linked below. And yet, this is labor that many individuals with disability do, daily. For able-bodied allies of individuals living with disability, making an effort to understand this burden and empathize with it is a healing step.
There is no way to navigate communication about illness or disability perfectly each time; every person's needs, preferences, and lived experiences are different. However, in order to facilitate open dialogue, here are some useful tools and guidance:
Speak with respect and openness to feedback.
Speak directly to the person with the disability, even if they are accompanied by another person.
Put the person first, not their disability. Check out this CDC Fact Sheet regarding person-first language and additional communication recommendations.
Avoid negative phrases such as ‘suffers from’ and ‘crippled’.
Listen carefully and be patient.
Be honest and don't raise your voice.
Check back in to make sure you’ve understood correctly.
Ask before you help.
Use their preferred language and terminology regarding an illness or condition.
Use communication methods such as sign language or communication aids if necessary. Click here to access ADA resources to facilitate effective communication.
Note: The National Crisis Line is accessible to deaf and hard of hearing individuals:
Thank you for taking a moment to pause here, today, to learn. May your July be filled with community and interdependence. May you take the time to reach out and learn how to truly connect with someone different than yourself, today. After all, in the words of famed psychologist Harry Stack Sullivan, "We are all much more simply human than otherwise."
Never doubt that a small group of thoughtful committed citizens can change the world. In fact, it's the only thing that ever has. -Margaret Mead
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