Week 14 – South Carolina

 

PHOTO — The disAbility Resource Center team, which provides crucial resources for people with disabilities in the Charleston region of South Carolina.

 

“I celebrate myself, and sing myself,
And what I assume you shall assume,
For every atom belonging to me as good belongs to you.” –Walt Whitman[1]

A budding branch of our country’s growth toward justice is the dynamic and multifaceted disability community. Initiated during the Civil Rights Movement, Centers for Independent Living have formed around the nation with the intention of helping people with disabilities get the resources they need to have a voice and to pursue their dreams.

“In the sixties people believed we should have the same dignity and basic civil rights; that is what independent living affirms more than anything else,” says Gwen Gillenwater, Executive Director for the disAbility Resource Center in Charleston, S.C. “It’s a matter of justice for all and that’s something I fight very hard for.”

I spent a week with dRC, which provides advocacy, legal assistance, access to technology (such as improving someone’s wheelchair to fit their body) and many other services. My experience produced challenging lessons about “us” and “them” as I considered what accommodating disabilities means for community.

Often “we” may reduce people with disabilities to a homogenous identity that assumes total mental and physical incompetence. We exaggerate the challenges of people with disabilities and we only “deal with them” as much as we have to.

Nathan Todd, Assistant Director at dRC, says people look past him whenever possible and that avoidance is “the worst thing in the world.” He recalls going to the store as a young adult to buy a new bed, accompanied by his mother. “The whole time the lady is talking to my mom,” he says, “even as I paid her at the cash register. The bed’s for me, I’m paying for it, but she keeps talking to her.”

In other words, we fail to meet people with disabilities at a place of being human. Instead, they are defined by and limited to their disability, and therefore dehumanized. This turns a person into an object and asserts they are without value.

“That was how my search for employment was,” says Todd, whose cerebral palsy affects his gait. “I would do great on phone interviews and when I walked in I could tell it was a waste of time. It was like, ‘We’re not doing anybody any favors here.’

“That’s a hard thing to navigate,” he says. “But you develop a thick skin really fast.”

Oppressed groups inevitably form their identity by putting walls up against everyone else. Tragically, this separates us as communities and stifles the presence of love. We have created the “us vs. them” divide that puts people with disabilities on their back foot, so to speak, growing thick skin and becoming an “us” to protect against “them.”

Of course there really are differences for people with a disability. One problem isn’t that we fail to acknowledge that as a difficulty, but that we pretend we are “whole” and they are “broken,” that we are mutually exclusive groups of “able” and “disabled,” and that we are superior. Not only are we all living with the benefits and difficulties of our own uniqueness, we are all inevitably people with disabilities at the beginning and the end of our lives.

“Unfortunately many people don’t see it as disability if it comes with aging – it’s just getting old,” says Gillenwater. “People see it as a negative. I think that’s far-fetched. It is what it is. There’s a part of you that doesn’t function fully.”

A subtle but meaningful semantic adjustment is to speak not of a disabled person, but a person with a disability – the “person-first language” approach emphasizes the humanity of each of us as a starting point.

I led a personality workshop with the dRC staff, and it was great to explore the uniqueness of each participant because they are a team in which each one truly complements one another. Additionally, it showed how personality and leadership strengths and styles transcend physical and intellectual spaces and abilities.

It’s only by giving someone the support they need that we can promise “life, liberty and the pursuit of happiness.”[2] We created, and are always recreating, a society that assumes particular capabilities as realistic or reasonable. As a community we provide support accordingly, thereby creating parameters that leave some as “disabled.”

When we talk about a “good cause” like a non-profit or public initiative, we tend to think success comes with maximizing efficiency, growth and productivity. But the goal should never be to reach as many people as possible. The goal should be to get as close as possible to everyone.

Public transportation and public bathrooms should never strive to serve “as many people as possible.” They should aspire to serve everyone.

That pursuit means prioritizing an examination of who is on the margins, who is invisible, and who is ignored. It also means it is incumbent to acknowledge that quality doesn’t come in spite of diversity. Increasing diversity increases quality because beyond the starting point of being human, everyone has a unique set of gifts.

We need to be excited about how much talent and worth every person has, and to be motivated to help them thrive. There are seven billion people in the world, and every one of them has the innate ability to love.

“People get into their own world but if everybody would see a need you’ve heard your call,” says Gene Reese. “Go out and help somebody. A mechanic isn’t just a mechanic for his own car. God didn’t put us into this world to be an island: Every talent you have is for the good of someone else.”

Dr. Susan Newman is a nurse at MUSC Hospital and worked with Reese and other individuals with spinal cord injuries to create a video project called Photovoice: Community Participation After Spinal Cord Injury, which illustrates first-hand the experience of folks living with spinal cord injury in Charleston.

“Historically research has been ‘us and them’ – people doing stuff to them and identify problems ‘they’ have,” Dr. Newman explains. “Once the grant dollars dry up, there’s no sustainable change. The approach we take, community-based participatory research, breaks down that ‘us vs. them’ because I’m not calling all the shots. Together we identify the problem and figure out how we’re going to address it.”

A new program at the dRC is a “peer navigator” project that sets up mentorships for newly injured individuals. “That’s when you need somebody to give you that little push – you’re going to have to do it a little differently but you gotta do something for yourself,” says Reese. “We help them say, ‘Today was a good day. I’m gonna shift into another gear tomorrow.’”

Why is it that only other people with disabilities, medical professionals, or family members are willing to provide that push?

We can transcend the “us vs. them” structure of people with and without disabilities by seeing the person first. Instead of pitying or avoiding someone with a disability, one ought to seek to learn about another person’s background, interests, skills, ambitions and challenges.

“There has to be some level of communication,” says Gillenwater, “and not just rhetoric – you have to truly listen. You’ve got to truly put yourself in that position and be fully cognizant of what that life may be.”

“Don’t be afraid to come talk to me,” says John Bryant.

“Ask instead of staring,” adds Anjanette Johnson.

“We’re more powerful than we think,” notes Cheryl Weathers. “You don’t have to be a group to change the way people think about people with disabilities. It’s a matter of heart and willingness to understand.”

The fact that we all will acquire a disability if we live long enough (1 in 2 people over 75 have a disability; so do 1 in 3 seniors aged 65 to 74) is an obvious lesson in transcending “us” and “them.”[3]

But to think “it” could happen to you is to lose the battle before it is fought, because “it” has been identified as inevitably negative and defining. The only way to bridge our fragmented community is to remove pity from your gaze.

Pity is a constant and condescending force for people with disabilities, who are repeatedly told they are “inspiring.” This focus on one’s lack puts the disability before the person. In a speech class I attended during the week for young people, the leader made an emotional declaration that it “warmed (his) heart” to see speeches that were as good as all his other groups “where they have all their faculties.”

People with disabilities are not amazing in spite of their disabilities, they are amazing as human beings – not to mention as people who overcome oppression and low expectations from others. This does not mean we should ignore abilities and remove accommodations (“do it on your own”) or remove the opportunity to speak and act (“do it for them”), but should work to enable us all to “do it together.”

An inclusive society is one in which people’s talents are given room to grow and the biases of their identities are not held against them.

We’ve seen through race relations that that’s easier said than done. Regarding the slippery territory of race and schools, Justice John Roberts>[4] argues, “the way to end discrimination on the basis of race is to stop discriminating on the basis of race.” (To which South Carolina native Stephen Colbert[5] responds mockingly, “Yeah! Everybody just cut it out!”)

The disability community fights for civil rights, and the opportunity to thrive as people. Like systems of oppression formed on the basis of race, class, gender, sexuality, nationality or age, it will take more than a convinced Supreme Court to complete a social revolution. It will take an inspired society.

“I can’t tell somebody else how to think and feel,” says Reese, “but if I go out and let my light shine maybe somebody will say ‘I want to go out and help somebody.’”

Dr. Martin Luther King, Jr.[6] wrote, “Love at its best is power implementing the demands of justice.” Justice demands we consciously consider accessibility in public spaces. It demands we ask, not stare. It demands we recognize and respect all people as people. And it demands that instead of judging others through resentment or pity, we empower unconditional love.

We have to acknowledge that that isn’t easy, no matter how much we try to reduce a situation with the word “just.” It isn’t just caring about someone, or just ignoring difference, or just making a little bit of an effort. There are countless variances within a single disability, and myriad ways people might be limited or not limited. It takes real cognitive and social work to wrap your head around the mission and journey of the disability community.

So I try to remember that I don’t ever have it all figured out. After a week of deep conversations with diverse individuals, I thought I had a strong understanding of the range of obstacles that go with particular disabilities, and I thought I had been desensitized to the daily struggles of discrimination and inaccessibility.

Then my final day in Charleston, I went to the speech class and met Deanna Douglas. Douglas has almost no movement in her extremities, a large overbite, slurred speech and a shyness that leads people to assume she can’t intellectually process much.

Whether it was her ability, age or gender that sparked his paternalism, the man who made the well-intentioned-yet-highly-condescending “faculties” comment earlier called her “dear” and similar pet names while gingerly offering that she give her speech from the back of the room unlike the other speakers who had come to the front. She declined, drove her power chair to the front and waited as he introduced her with a hearty laugh as he read her speech title, “Bathroom Stalls and Other Locations.”

She allowed a grin before unleashing an eloquent fury that hit me like a ton of bricks.

I know it’s a funny title, but when you’re disabled, going to the bathroom is a major issue. Every public building I go to, I’m terrified of going to the bathroom. I think it symbolizes how people in the disability community are the last people thought about. I fell once. Imagine calling someone and saying ‘I’ve fallen on the bathroom floor and I have no panties on.’

What type of society do we live in if we cannot provide for the most basic level of human needs? Where are the lines between good will and pity? Between accommodating most and accommodating everyone? And between acknowledgment of difference and true understanding of another’s situation?

They are never so easy to figure out, but we have to keep thinking, keep expanding access and keep loving.

Justice demands it.

 

What do you think? Please share your thoughts in comments on the blog!

 


[1] Walt Whitman (1881) “Song of Myself.” The Whitman Archive. Available <http://whitmanarchive.org/published/LG/1881/poems/27>.

[2] The Declaration of Independence: A Transcription.” 4 July 1776. Accessed 6 Jan 2013 at <http://www.archives.gov/exhibits/charters/declaration_transcript.html>.

[3] “2011 Disability Status Report: United States.” Cornell University. Pp. 19-21. Available < http://www.disabilitystatistics.org/StatusReports/2011-PDF/2011-StatusReport_US.pdf?CFID=2677152&CFTOKEN=48157368&jsessionid=8430a13610e45f33ff604b7ea8763a6f7259>.

[4] Parents Involved in Community Schools v. Seattle School District No. 1, 551 U.S. 701 (2007). Argued December 4, 2006. Decided June 28, 2007. Accessed 9 Feb 2013 at <http://caselaw.lp.findlaw.com/scripts/getcase.pl?court=us&vol=000&invol=05-908>.

[5] “Affirmative Action Supreme Court Case.” The Colbert Report. 16 Oct 2012. Accessed 6 Jan 2013 at <http://www.colbertnation.com/the-colbert-report-videos/420234/october-16-2012/affirmative-action-supreme-court-case>.

[6] Martin Luther King, Jr. “Where Do We Go From Here?” Annual Report Delivered at the  11th Convention of  the  Southern Christian Leadership Conference, 16 Aug 1967, Atlanta, Ga. Accessed Feb 9 2013 at <http://mlk-kpp01.stanford.edu/index.php/encyclopedia/documentsentry/where_do_we_go_from_here_delivered_at_the_11th_annual_sclc_convention/>.

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