Guest Essay: "Coming Home to Disabled Country"

Sarah Triano and Laura Obara

As we waited for the elevator in the San Francisco Muni station the morning of October 21, Laura and I could barely contain our excitement. After a long journey from Chicago, we finally made it to San Francisco for our first national ADAPT action. Even though we had both been actively involved in the National Disabled Students Union, and in the activities of Chicago ADAPT, we couldn't wait to experience the "coming home" feeling that many people talk about after attending their first national ADAPT action. It was a typical foggy day in San Francisco, the type of day that makes it very difficult for someone with an immune system disability—like myself—to climb stairs, so Laura and I decided to wait for the elevator. As we were waiting, a voice from behind us said, "You know, you ABs should really take the stairs and leave the elevator for those of us who need and deserve it." After signing this message to Laura, who is Deaf and uses hearing aids, she and I turned around and found ourselves face to face with a white, middle-aged man in a wheelchair. "We have a new name for you ABs," a young woman in a chair beside him said to us. "We call you Walkie-Talkies." These were the welcoming words that greeted us when we arrived at our first national ADAPT action. Needless to say, the "coming home" experience for us was less than welcoming.

Laura and I are both young women who openly and proudly identify as people with disabilities–young, disabled women who experience disability discrimination in the wider society on a daily basis. When the discrimination comes from within your own community though, it hurts, it hurts really bad. It takes a lot for someone with a non-apparent disability to get to a place where they openly and proudly identify as disabled. The pressures for us to "pass" and deny our disability —and our community—are tremendous. But to finally get to that place of power and pride and then be called an AB or a "walkie-talkie" by someone who you consider to be your sister or brother is both disempowering and devastating.

I wish I could say that this was an isolated instance of ignorance—which is evident in every community, no matter how "progressive"—but I can't. This "culture of internal exclusion" that we experienced at the national ADAPT action is something that people with non-apparent disabilities deal with all the time within the US disability rights movement. Take, for example, the time when I shared on the Berkeley disabled mailing listserv about the person who glued a sign to my car windshield—after I parked in a disabled parking space—that read, "Mentally Handicapped," only to receive the following response from one of my "brothers" with a disability: "Oh no, it's another one of those 'supposed' invisibly disabled people trying to jump on the disability bandwagon again."

Are we at a place in our movement where the efforts to police the boundaries (of who is and is not disabled) are overtaking our initial vision of equality and inclusion for all? At the center of many of our struggles in the international disability rights movement is a fight against exclusion and segregation. National ADAPT's on-going commitment to this fight is what motivated Laura and I to travel all the way from Chicago and participate in the San Francisco action. We—and 20 other members of NDSU from across the country—were there to make a statement against exclusion and segregation everywhere, yet that is exactly what we experienced while there in a very real and hurtful way.

So the next time the question is asked, "Where were the NDSU representatives and people from California at the ADAPT action," or "what is the future of the disability rights movement and what seems to be the problem," remember that we were there—we are here—but perhaps you can't see us because of the preoccupation within the movement with patrolling the boundaries of disability and ensuring that one's own piece of the pie (or elevator or parking space, as the case may be) is not threatened. If we perpetuate the same discrimination within the movement that we are trying to fight externally, our efforts to combat societal segregation and exclusion will be limited and hollow.

In his message entitled, "The Future of the Disability Rights Movement," George Kerford asked, "can we use the excuse that ADAPT is too radical. Are we afraid to be called radical?" That depends on your definition of "radical." The prominent civil rights activist, Ella Baker, once defined "radical" as "getting down to and understanding the root causes." "It means facing a system that does not lend itself to your needs," she said, "and devising means by which you change that system." Perhaps there is a more "radical" way of looking at this issue. Rather than pointing fingers and accusing each other of not being supportive in typical medical model fashion, why don't we—as a community—try to get down to and understand the root causes of the lack of participation within the larger movement. We need to face a system—the US Disability Rights Movement—that is not currently lending itself to the needs of many and devise a means by which to change that system.

And if you don't believe that the disability rights movement itself constitutes a system that has been institutionalized, then just ask those of us who have been—and continue to be— excluded and left out. Just ask someone who has a non-apparent disability, a disabled person who is from a non-Western culture, someone with a cognitive disability, a psychiatric survivor, or someone who is an atheist, a queer disabled person, or someone in the community who is non-white or poor. When I refer to the "malestream disability rights movement" and receive hate mail, I know we still have a long way to go. When the woman with breast cancer and the African-American janitor with asthma are denied equal justice, but the white, privileged, Stanford male graduate who can afford to play golf is not, I know we still have a long way to go. When Laura and I can finally attend a national disability rights action and not be called ABs and "Walkie-Talkies" but be considered equal partners in the fight for social justice and disability rights, I will then know that we—as a community—have finally started to effectively address not only the systemic exclusion that we experience at the hands of the broader society, but also the systemic exclusion and segregation that has been institutionalized within our own movement.

Hannah Arendt once said that, "the most radical revolutionary will become a conservative the day after the revolution." Since its founding, the disability rights movement in the US has served as a strong voice for radical revolutionary change. But no radical revolutionary force can remain so as long as it refuses to constantly evaluate itself and adapt according to the demands and needs of the changing times. When the strategies we use start to exclude and offend key segments of our community, allow participation by only those privileged members who can afford to participate, and rely on a tactic of secrecy to the point where it becomes an access barrier for members of our community with cognitive and other disabilities, then we have ceased to be radical and revolutionary.

We hope this statement will not be viewed as an effort to tear apart the movement or to create unnecessary internal divisiveness. Instead, our purpose with this statement is to challenge all of us—NDSU included—to take the disability rights movement to the next stage, to strive for a higher level of inclusivity and equality that recognizes and celebrates, in the words of Cal Montgomery, "the many different fabrics out of which the disability cloth is made." This is a challenge to make participation in the disability rights movement the "coming home" experience that it should be for all Americans with disabilities - those with apparent and non-apparent disabilities alike. No one should be treated like a second-class citizen in this, the country of disability - a land we someday hope to call home.

In solidarity,

Sarah Triano and Laura Obara

Members, National Disabled Students Union (NDSU)

Deaf, Disabled and Proud Women!

*The phrase "disabled country" comes from a poem by Neil Marcus entitled, "disabled country."

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