July is Disability Pride Month. This year it marks the 33rd anniversary of the Americans with Disabilities Act, the most important and well-known civil rights law covering people with disabilities in the United States.
Each year’s Disability Pride Month is also a time to celebrate and inform people about disability issues and culture. It’s also a prompt for disabled people themselves to focus a bit more closely and deeply on their own state of disability pride.
For those who might be a little confused about what “disability pride” might mean, two poems are a good place to start. The first, by Emily Ladau, was written this year with Disability Pride Month in mind. The second, “You Get Proud by Practicing,” by Laura Hershey was written in 1991, just a year after passage of the ADA, and well before widespread observance of Disability Pride Month
Both poems celebrate the vibrancy and resilience of disabled people and disability culture, while acknowledging the hardships of disabled life – especially the barriers imposed by an ableist society. It can be irresponsible at worst, at best out of touch, to suggest that “disability pride” is something you can just decide to have, regardless of circumstances. A lot of disabled people find it hard to feel pride when their most dominant emotions and experiences are financial insecurity, fear of physical danger or abuse, and soul-crushing isolation and prejudice.
It’s important that these less celebratory feelings are included in Disability Pride Month observances. It’s also why disabled author and activist Alice Wong has suggested a different approach to Disability Pride Month this year, calling for attention to #DisabilityPrecarity – the ways that disabled people still struggle just to survive.
Survival is the top priority for most people with disabilities, usually above pride. It’s also often a prerequisite for pride. Despite the strong popular idea that pride and self-confidence are essential for survival and success, it’s often less true in real life than it is in hopeful imaginings and wellness ideologies. More often, disabled people find that at least some degree of accomplishment and personal and financial security are necessary first in order to enjoy any sort of “disability pride.”
And yet, pride is still a valid separate goal for disabled people. “Disability pride” isn’t always a celebration of something already achieved. For many disabled people, it’s more like an aspiration. So here are just a few of the things disabled people need in order to realize the goal of true disability pride:
1. To feel less alone
First, and most fundamentally, physical isolation hampers disability pride. This isolation comes from disabilities themselves, but also from chronic lack of accessibility and accommodations that make it harder for disabled people to move around their communities. Disabled people also tend to endure more social isolation. This too has many practical causes. But it is made much worse by non-disabled people’s discomfort and ableism, which makes them less likely to engage with disabled people and include them in their social circles — sometimes even in their own families.
Finally, many disabled people experience a demographic, cultural, and political sense of being alone. Most disabled people start out their disability experience – from birth and childhood, or from later in life injury or illness – feeling almost entirely unique, or at best part of an insignificantly tiny minority. Some disabled people are just as unaware as non-disabled people how large a minority people with disabilities really are. Disabled people are a minority. Most people don’t have disabilities. But they are a substantial minority. Somewhere between 15% of Americans, (U.S. Census), and 25% according to the U.S. Centers for Disease Control, have some kind of physical or mental disability.
Disabled people today are a good deal less isolated both personally and socially than they were 50 or more years ago. Laws like the ADA, more physical accessibility, and changing attitudes have helped. But disabled people are still on average less personally integrated and recognized than most non-disabled people. And pride is hard to maintain when you feel isolated and alone.
2. To stop being embarrassed and apologetic
One of the most common emotions that come with disability is also one of the most difficult to describe. It’s not so much the loss or absence of specific capabilities, but rather a sense of being in the way, a complication, a bother and expense to others. There are a thousand systemic barriers, ableist practices, and interpersonal habits that reinforce this. Every benefit seems to come with a stigma. Every accommodation implies an imposition. And nearly every disabled knows what it’s like to be treated like an unwanted physical impediment – an out of place object to be moved or maneuvered around, not a person with thoughts, feelings, and a right to be present and participate.
On top of this, many people with visible disabilities harbor a nagging awareness of looking and acting differently. For many, that includes literally feeling ugly — whether or not that’s something they have actually been told. Some people’s reactions to seeing visibly disabled people are not subtle. And disabled people get the message – even in the most enlightened, disability-friendly, and nominally supportive settings.
These feelings can add up to disabled people feeling embarrassed at being the way they are, and always feeling a to justify themselves and their worth. It leads to feelings of guilt, perpetual debt, and a constant need to apologize for being who they are. For many disabled people it’s an emotional burden as great if not greater than their actual disabilities.
Obviously, moving beyond embarrassment and this need to justify and apologize is essential to disability pride.
3. To be listened to and believed
One of the most practically harmful and emotionally painful forms of ableism is also one of the most common. And that is not being believed. Disabled people are disproportionately thought to be lying, cheating, or bending the truth to gain some advantage. Or, they are assumed to be incapable of understanding their own situations, making them “unreliable narrators” of their own experiences.
This is perhaps the most harmful and common in healthcare. Disabled people are frequently doubted, misinterpreted, overruled, and manipulated by medical professionals. Doctors, nurses, and other medical staff assume disabled people don’t fully understand their conditions. And when illness and conditions can’t readily be diagnosed or fixed, they conclude that the problem must be a confused, unreliable, or dishonest patient.
Similar implicit disability biases appear in education, social service programs and workplaces. They also affect everyday personal interactions. A lot of otherwise well-meaning non-disabled people question disabled people’s stories of hardship, especially when it’s about disability discrimination. Instead of listening and empathizing, they grill disabled people like prosecutors. “Was it really that bad? Maybe you misunderstood. You should have said this, not that!” They offer either incredibly obvious or incredibly bizarre and misplaced “solutions,” like filing a complaint, (both obvious and usually not very effective), or practicing meditation. It’s demoralizing for disabled people when they feel that the people around them regard them not just as someone with an impairment, but as a kind of perpetual child, or someone who needs to be steered and managed, rather than heard and respected.
So, what can non-disabled people do, during Disability Pride Month and in all other eleven months, to help disabled people foster inner disability pride and practical wellbeing?
- Treat individual disabled people as you would want to be treated. Recognize that disabled people constitute an important community worthy of respect and influence.
- Curb your impatience or irritation when a disabled person needs extra time or assistance. Don’t make them feel like they need to apologize for existing or asking for help.
- Listen to actual disabled people. Believe what they say about their experiences and disability experiences more broadly. Grant them the age-appropriate credibility due to everyone else.
Meanwhile, disabled people can take heart from this passage in Laura Hershey’s poem:
“Remember, you weren’t the one
who made you ashamed,
but you are the one
who can make you proud.”
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