Approximately 20 young people headed for the bus, A bags in hand, sunglasses in position and water bottles stowed. We were about to depart for an action-packed afternoon of getting-to-know-you activities, part of a youth-with-disabilities retreat that would kick off a larger conference. The day was perfect. Our surroundings made us feel as though we were living in one of the picturesque 79-cent postcards we had passed on the way out of the hotel. The sky was a rich, sultry blue, as brilliant as stained glass; the air was pure and fragrant, and a light breeze tickled our skin as it rolled by.
We filed into the bus, our guide taking her position at the helm. As we claimed our seats, she swept up the microphone and blew a few puffs to test it. My ears rattled; in the second row I was in her direct line of fire. “Welcome to an exciting afternoon arranged by people with disabilities for people with disabilities,” she announced. Her statement echoed the theme of the conference and the audience answered her with applause. “But before we get on our way, I want to share with you something from our sponsors-gift bags for all of our youth representatives!”
She loaded her arms with bags and began working her way down the aisle, distributing them to the conference participants as she went. A guy in the seat in front of me thanked her and started sorting through his bag. The girl directly across the way from me exclaimed, “Cool!” even before opening hers. The hostess passed right by me, however, and continued her way down the aisle.
The girl across from me leaned over and asked, “Hey, where’s your bag?” I replied, “Oh, I think she’s just in a hurry. No worries.” But as the hostess returned to the front of the bus, my new advocate piped up, “Hey, you missed someone over here.”
The hostess smiled and made eye contact with both of us. “We got these specifically for our youth representatives at the conference-not for their personal assistants,” she explained.
I smiled and released one of those neutral, generic, what’s-that-I-just-heard chuckles. Her face didn’t change. “Sorry,” she said. She was serious.
No, my disability isn’t outwardly obvious, and the hostess hadn’t talked with me long enough to see the signs. Instead, she independently made an assumption. She had asked no questions to determine in what capacity I was there. In the end, I got my bag of goodies…and had a major realization: This instance didn’t just speak to the mindset of one particular woman, but represented the where-do-I-fit dilemma that people with hidden dis abilities face all the time.
Confirmation came a few weeks later at another conference when I was a part of a team developing a flyer for recruiting youth into a disability-related organization. The group came up with wording that would be alluring to the ears of tomorrow’s leaders, a cool font style and an eye-catching paper color. The final task was to select a photo that captured the organization’s theme.
“People with hidden disabilities are caught between two worlds, often feeling not quite included in either the able-bodied or the disability communities. At times, both groups unwittingly project a seeing is believing mentality if you look disabled, then you are disabled, and if you don’t t you aren’t.”
When the team shared the final product with the organizer of the event, who happened to have a disability herself, she said, “This looks good, but let’s find a different photo. We want our audience to know that our services are specifically for young people with disabilities.” The fact that some of the young people in the photo didn’t have visible disabilities, in her mind, diluted the message.
People with hidden disabilities are caught between two worlds, often feeling not quite included in either the able-bodied or the disability communities. At times, both groups unwittingly project a seeing is believing mentality-if you look disabled, then you are disabled, and if you don’t you aren’t. Of course, this outlook flies in the face of the social change objectives that anchor the disability movement-the dictum to look past appearances, to see the person rather than the disability, not to presume at a glance what an individual needs or can accomplish.
Consequently, many people with hidden disabilities struggle with whether to even identify themselves as having a disability. In a civil rights movement where decades have been spent trying to de-medicalize the concept of disability, people with hidden disabilities sometimes find themselves in the ironic position of having to collect medical evidence to prove their right to inclusion in the disability world. Others may try to pass as able-bodied, failing to ask for accommodations they need and thus facing the unnecessary perception that they are continually falling short of expectations.
Members of the disability community share serious concerns across the board: worries about changes in health care, about necessary accommodations that may or may not be provided, about employment and job security, and about the preservation within our legal system of hard-fought advances in civil rights. Like all groups, during times of great concern, we may find ourselves splintering and protecting our own. However, it’s precisely during states of emergency that it’s most important to unite as the influential community we have the potential and ability to be.
One of my most memorable college classes was about the Holocaust. It spoke of oppression, discrimination and injustice. Do those themes sound familiar? Yet one statement made by the Reverend Martin Niemoller, a German anti-Nazi pastor, stood out above the rest:
“First they came for socialists, and I did not speak out because I was not a socialist. Then they came for the trade unionists, and I did not speak out-because I was not a trade unionist. Then they came for the Jews and I did not speak out-because I was not a Jew. Then they came for me-and there was no one left to speak out for me.”
These words are relevant for the disability community now more than ever. We are one of the largest social communities known to American history consisting of all ages, races, religions, economic backgrounds, genders and sexual orientations. We have the choice to come together and be one of the most powerful families of people to create change. My question is this: Who are we to point fingers until we can lead by example?
The next time you hear yourself telling someone that you work with an all-inclusive organization, pause for a moment and ask yourself if you really are all-inclusive What about youth? What about people with cognitive disabilities? What about people from remote rural are or inner-city locations?
The next time you advocate that resources or services be more readily available, ask yourself if you are refer ring to services specifically for those with your disability, in your age range, of your geographic location or in your organization. Or are you referring to services overall for people with disabilities, a much larger body of individuals?
The next time you stand with other members of the dis ability community singing our signature song, the liber ty anthem “We Shall Overcome,” step back for a moment and recognize that some of the most important. most immediate challenges to overcome may be within that very room.
by Betsy Vaines
Betsy Valnes is a young adult who experienced a traumatic brain injury She is a disability advocate both within the United States and abroad and is the founder of New Voice, New Vision consulting service, through which she speaks, writes and develops workshops about inclusion, advocacy, accessibility and the transition from school to the career world for young people with disabilities.