We are all dealing with a lot of fear right now as news about the fast spread of COVID-19 reach our communities and change the landscape of our daily interactions, and the way we operate socially and physically. It almost seems like, from one minute to the next, a threat that had seemed so far away just a few weeks ago is now knocking at our door, challenging every aspect of our existence and our ability to survive.
And by survive, I mean not only staying alive in the physical sense, but also our ability to not forget about each other’s humanity.
Disabled people are always forgotten. The inherent value of our disabled lives is discarded and negated while our abilities are measured against ableist expectations of productivity and independence. While the non-disabled world freaks out about social isolation during COVID-19, many disabled people have been forced into isolation their whole lives.
Disabled people have been having to survive on advocacy alone, making dreams out of leftover nightmares, and feeding crumbs of hope to our own dreams in order to keep going. Somebody once said that we can’t dream when we’re drowning.
Right now, most people feel like they’re drowning. But disabled people have been surviving this way for so long, that we have learned to dream in the midst of always having to fight for our right to live —our right to keep our heads above water and still dare to believe that our lives are worth saving. As disabled people we are very aware that our risk of dying goes beyond medical fragility. Our risk of dying, during this global crisis, has a lot to do with the fear driven ableism that leads society to believe disabled lives can be considered disposable.
We are, in the eyes of the non-disabled world, the throwaways of society, the ones that can be sacrificed with less guilt. After all, we were suffering anyway, and were contributing little or nothing to the world. Those are some of the dangerous myths that have shaped the mentality of the people who may now have the power to decide whether we live or die.
That’s why right now, our survival must go beyond physical precautions. It must go beyond all levels of advocacy we have ever been a part of. Right now our survival also depends on having to constantly remind the world of our beautiful humanity —the value of our disabled lives.
Society needs to see who they are willing to sacrifice. They are willing to let us die because they don’t see our humanity. They are able to justify our oppression because dehumanizing those who are different allows the oppressor to not find value in our existence.
Looking back into the history of oppression outside the context of disability, slavery was justified the same way. The “white world” like the non-disabled world justified the injustices black people suffered because society failed to see value and humanity in black lives.
Disabled people are still facing that level of oppression even by those who have also been oppressed. For that, and many other reasons, our fight to stay alive must involve the use of our own experience and our own history of survival. Now more than ever, we must show the world how it’s done.
Baby, we’ve already been there, and done that. We’ve survived invisibility, isolation, segregation, and then some. We’ve survived being treated like medical experiments. We’ve survived being left out of every movement and every revolution. We’ve survived silence, darkness and broken spaces, we’ve survived the many phases of ableism, and, together, we’ve become community, an earth shaking force capable of transforming the world and the way we are seen.
Now more than ever, we must rely on our personal stories as a way to make the non-disabled, medical model minded world realize that our lives are filled with joy, and laughter, art, music, culture, family, community and the strength of the myth shattering solidarity and life-giving advocacy we generate every day because as disabled people, our survival depends on our ability to feed off of each other’s humanity.
The non-disabled world will forget about us. It is easier for them to believe they’re doing us a favor by letting us die. They are willing to turn the other way pretending we’re better off in heaven anyway, or whatever ableist lie they choose to tell themselves.
But we…we know better.
We know that our value does not have to be attached to a non-disabled life. Our worthiness does not depend upon normative rules of productivity. We don’t need a college degree to validate our life experience. We have disabled role models we look up to. We have years of untold history of collective liberation and future generations of disabled people who will need to know how beautiful and amazingly powerful our journey in our disabled bodies has been—how disabled people have always, and since forever been fighting for survival.
This is not the first time our lives are in danger. Disabled people are always in danger of being locked in institutions, losing our independence to some budget cut, or simply being denied access to life’s regular opportunities like employment, accessible housing or social interaction.
So, as the storm passes and we are left to drown, disabled communities around the world will continue to bond and strengthen one another. We will hold on to each other sharing whatever little we have, and showing the non-disabled world survival skills they didn’t know existed…things their privilege did not allow them to see.
The non-disabled will finally see themselves in our reflection. They will be willing to learn from our experience and benefit from our survival. Many life lessons will be up for grabs after we adjust to the many changes brought upon by COVID-19.
For one thing, until now, non-disabled rules of engagement and productivity involved physical mobility and the demand of having to be somewhere for eight hours a day in order to do a job. The thought of working from home was something that, until COVID-19 forced everyone into isolation, most employers would not encourage or want to offer as an
accommodation.
One of the things the world will experience will be coming face to face with the reality that working from home opens up a whole new world of opportunities and formerly untapped human resources of eager disabled workers who can run entire operations, projects, meetings, events and social relationships, many times without ever leaving their beds.
What the world will suddenly learn about disabled people is how much life experience and survival skills we already own—how we make do with minimal resources, how we invent life hacks that let us build dreams out of our harsh realities. The world will learn that we, too, have talents and gifts, and abilities that transcend beyond the ableist barriers imposed by the usual norms.
Now that the whole world is “working from home”, let’s open our cyber windows and yell out our truths. Let’s remind the world of how much we, too, love life. Let’s stream our beautiful disabled lives for the world to see. You see, as tired as we may be, as scared as we may feel, as isolated as we may be right now, we still have power, and we still need each other. We need each other to not lose hope. We need each other to create hope. We need each other to make sure we are not forgotten for unless we keep reminding each other and the world about how valuable we are, our humanity will be forgotten, our worth will be reduced to ableist lies, and our stories will only be told through a non-disabled voice that only tells the parts they want to believe as true.
But how do we recognize the value of our own humanity when throughout our lives we, ourselves, have not been given the opportunity to think outside the ableist box we’ve been forced into? The concept of disability pride is something that emerges from our ability to see ourselves in other disabled people, but doing so from a position of love and empowerment rather than fear and pity.
Our most important advocacy right now has to do with making our humanity evident to those who think disabled lives are void of human value.
Below is a poetic descriptive of some of the ways to define what disability pride means.
DISABILITY PRIDE MEANS
RECOGNIZING THAT OUR LIVES ARE ALWAYS WORTH LIVING,
WORTH SAVING,
WORTH LOVING.
DISABILITY PRIDE MEANS
LOVING OURSELVES AS WE ARE
EVEN WHEN THE WORLD MAY BELIEVE WE SHOULDN’T.
DISABILITY PRIDE MEANS
WE ARE NOT ASHAMED OF OUR DIFFERENCES
ALTHOUGH WE’VE BEEN TAUGHT WE SHOULD BE.
DISABILITY PRIDE MEANS
OUR STORIES CONNECT TO EACH OTHER THROUGH EMPOWERMENT,
HOPE AND ADVOCACY RATHER THAN PITY OR SHAME.
DISABILITY PRIDE MEANS
WE FIND POWER, STRENGTH, AND BEAUTY IN BODIES THAT LOOK LIKE OURS, AND LIVES THAT REFLECT OUR OWN.
DISABILITY PRIDE MEANS
BREAKING FREE AND BREAKING OUT OF THE MEDICAL MODEL TO CREATE MODELS OF INCLUSION THAT CELEBRATE WHO WE ARE
JUST AS WE ARE.
DISABILITY PRIDE MEANS
MAKING SPACE FOR OUR OWN STORIES
TOLD IN OUR OWN VOICES,
AND SHARED THROUGH THE LENS OF OUR OWN TRUTHS.
DISABILITY PRIDE MEANS
MAKING SURE THE NON-DISABLED WORLD GETS TO KNOW OUR STORIES, THE HISTORY OF OUR ACTIVISM,
THE PAIN CAUSED BY ABLEISM,
AND THE FORCE WE CREATE WHEN WE UNITE .
DISABILITY PRIDE MEANS
KNOWING DISABILITY IS NOT A BAD WORD.
IT IS RECOGNIZING OUR OWN WORTH,
AND THE HUMANITY IN EACH OF US.
DISABILITY PRIDE MEANS
WE DON’T HAVE TO MEASURE UP TO NON-DISABLED STANDARDS
TO FIND THE WHOLENESS AND THE VALUE OF OUR LIVES.
DISABILITY PRIDE MEANS
TEACHING OTHERS WHAT WE HAVE LEARNED
IN OUR OWN DISABLED JOURNEY,
SHARING THE LESSONS THAT WE HAVE GAINED
AS WE DISCOVER OURSELVES TO BE PROUD DISABLED PEOPLE
PROJECTING LOVE OVER OUR DIFFERENCES ,
AND DARING TO MAKE A DIFFERENCE THROUGH THE ADVOCACY WE SHARE, AND THE LIVES WE CELEBRATE
IN OUR DISABLED COMMUNITY.
IT MEANS LOVING OUR COMMUNITY
UNDERSTANDING THE ONENESS OF US
IN THIS CROSS-DISABILITY WALK OF LIFE
WHERE OUR DISABLED LIVES STRIVE TO EVOLVE
INTO THE BEST POSSIBLE VERSIONS OF OURSELVES
AND OUR OWN HUMANITY.
DISABILITY PRIDE MEANS
LOVING OURSELVES AND EACH OTHER
ENOUGH
TO KNOW THAT OUR ADVOCACY JOB IS NOT DONE
UNTIL EVERY SINGLE DISABLED PERSON CAN LIVE IN THE COMMUNITY
WITHOUT FEAR OF SEGREGATION,
WITHOUT FEAR OF INSTITUTIONALIZATION,
WITHOUT FEAR OF POVERTY,
WITHOUT FEAR OF ISOLATION,
WITHOUT FEAR OF LIFE AND FEAR OF DEATH.
BECAUSE BOTH BECOME ONE WHEN ABLEISM CONTROLS THE RESOURCES WE NEED
TO SURVIVE.
DISABILITY PRIDE MEANS
KNOWING
THAT DESPITE ANYTHING, AND EVERYTHING,
WE HAVE SURVIVED AND WILL SURVIVE
AGAIN AND AGAIN,
AND AGAIN,
AND AS WE DO,
WE MUST
ALWAYS CONNECT TO EACH OTHER
NEVER FORGETTING
THOSE WHO STAY BEHIND
FOR NOBODY’S HOME UNTIL ALL OF US ARE HOME
NOBODY’S SAFE UNTIL EVERYONE IS SAFE
NOBODY’S FREE UNTIL ALL OF US FREE
AND WE SHALL CONTINUE TO BE
THE FORCE THAT HELPS US BELIEVE
WE SHALL OVERCOME
WE WILL SURVIVE
AND WE ARE
IN THIS
TOGETHER
As we already know, disabled people have always had to fight for the right to exist. As the world faces the COVID-19 crisis, disabled communities across the nation and the world work together to stay alive. We check up on each other, share our personal resources, and fight for our lives like we always do, knowing we must continue this journey together even if physically apart. We already know how to do that. Yeah, baby. We got this!
Maria R. Palacios is a polio survivor, disability activist, author and artist whose artistic expression is one of the tools and weapons of her advocacy. Maria R. Palacios is one of the Capitol Crawlers from the iconic march of 1990 that passed the ADA. Her advocacy, since then, has taken many forms eventually morphing into her current voice –a voice unafraid of sharing the survival stories of the disabled people the world wants to forget.
Read another great piece from Maria R. Palacios. Click here.
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