Posted by StreetWise in Magazine Articles
by Suzanne Hanney
Disability rights activist and playwright Mike Ervin says he “was fortunate to be born in the nick of time” for someone who uses a wheelchair.
A native of the southwest side, Ervin graduated from college in 1978, 12 years before passage of the Americans with Disabilities Act (ADA) in 1990.
“The program I use now to get in and out of bed started in 1983,” said Ervin, who has muscular dystrophy. “I had to move out of my mother’s house in 1984. Had people before me not done what they did to make that program come about I might not have ever been able to leave my mother’s house because I would not have been able to afford the kind of help I need.”
Ervin was a founder of the transit rights group ADAPT in Chicago, whose street demonstrations and lawsuit led to wheelchair-accessible buses in 1988. A journalist who has written articles and essays for the Chicago Tribune, Los Angeles Times, Miami Herald and the Progressive, Ervin has protested the Jerry Lewis Muscular Dystrophy telethon as an “antiquated and destructive 1950s mentality” that turned people with disabilities into objects of pity.
People with disabilities want neither to be pitied nor seen as heroic, Ervin said.
“To me the life journey is discovering what things you enjoy doing and do well and to be able to pursue those to the best of your ability. A lot of disabled people are assumed to not do anything well. Others put that into their heads. A lot of people buy into it and they cower off into the corners that we allow people with disabilities to cower off into and sit there and wait for charity. I don’t think that most people that are in those places want to be there but I think they’ve been programmed to think that is what life holds for them.
“The main thing I would like to get across is that we have talents and abilities, things we want to do, things we want to contribute, but it’s not just a matter of getting out of our way and letting us do it.”
Ervin, for example, uses personal assistants provided through an Illinois Department of Human Services program for 9½ hours each day. A personal assistant comes in the morning, rolls him over, puts his trousers on, puts him in his wheelchair and helps him clean up. While he’s eating, they pay bills and do other household tasks. At night, someone else comes in to do the reverse: help him take a shower, use the toilet, get into bed.
Ervin’s life is regimented – but not as much as it would be if he were in a nursing home, he said.
Yet the personal assistant program is endangered in the current Illinois budget. People with a high “determination of need” (DON) score like Ervin, who has an 80, will continue to receive services. Those with a DON of 37 or lower will not.
Because Ervin fears more budget cuts, he joined a June 28 protest in the lobby of 340 E. Randolph St., where Gov. Bruce Rauner owns a condominium.
“All of us rely on public support every day: the sidewalks we walk on. When we flush the toilet, the pipes are public infrastructure. The people who say that public support [for people with disabilities] is extraordinary are missing the fact that everyone uses them, it’s just a different form of public support. It’s the job of society to put people in the position to succeed.”
Ervin said his activism is more important and more effective in the long run but theatre brings him joy. In 1999 for the Victory Gardens Theatre, he wrote The History of Bowling, a romance between a quadriplegic and an epileptic sidelined in a college gym class and made to write a term paper about an athletic activity. Along with Susan Nussbaum in 1990, he wrote the Plucky and Spunky Show, which he describes as a “Second City/Saturday Night Live kind of comedy sketch show that got mixed reviews.”
Two years later, Remains received a three-year grant for audience outreach. After Remains folded, Ervin took the Access Project to Victory Gardens Theatre, where it did Chicago’s first audio description for audience members who are blind.
With audio description, a specially trained narrator gives stage directions (“Phil sits down and scratches his nose”), describes the set over headphones, but does not step on the dialogue. Access Project also did the first open captioning for people who are hard of hearing, similar to supertitles used by Lyric Opera to translate librettos into English.
Access Project hosts a Saturday writing workshop at Victory Gardens that has produced seven shows. It is important to also put people with disabilities on the other side of the stage, Ervin said, so that they can tell stories with a different spin on disabilities.
He proudly cites workshop participant Todd Bauer, who is legally blind and an accountant by day. Raven Theatre recently produced Bauer’s The Bird Feeder Doesn’t Know, about aging parents of a young man with a disability. Theatre accessibility is getting a boost this year from ADA25Chicago. This 25th anniversary commemoration of the Americans with Disabilities Act celebrates past achievements and looks ahead to more inclusion, as well as education and employment.
Christena Gunther is founder and co-chair of Chicago Cultural Accessibility Consortium (CCAC), whose volunteers work in cultural institutions or have disabilities. CCAC is project manager for ADA25Chicago’s 25Cultural Access project.
The 25 Cultural Access Project has already exceeded its goal of having 25 diverse cultural organizations commit to becoming more inclusive this year. The 31 organizations that have signed on include the Steppenwolf, Lookingglass, and Goodman Theatres; Lincoln Park Zoo, Museum of Contemporary Art, Shedd Aquarium, Field Museum and Chicago History Museum, the storefront Jackalope Theatre and the Smart Museum.
The ADA is a complicated document intentionally left open to allow for interpretation, which can intimidate organizations addressing it for the first time, Gunther said. CCAC offers free monthly workshops to cultural administrators so they can create well-thought-out programs instead of one-off projects for the ADA birthday.
Evan Hatfield, director of audience experience at Steppenwolf Theatre Company, is co-chair of CCAC.
“I think that any patron, any customer going into an environment wants to have it signaled to them that the organization wants them to be there,” Hatfield said. “They want to have their experience be as boundary-free as possible.”
Arts organizations must adopt the attitude that “we want to share our art with as many people as possible.”
In addition to American Sign Language, Steppenwolf offers open captioning on two screens located on opposite sides of the stage to capture the play’s shifting action. “The biggest audience is actually people who may not have thought of themselves as disabled: people who are aging and find themselves turning up the volume on their TV,” Hatfield said.
“Touch tours” expand accessibility to people who are sight-impaired. These audience members come early to the theatre, where they may examine costumes and set.
In the last five years, 30 theatre companies have offered either audio description or touch tours for blind/low-vision audiences. Five years ago, only three or four companies offered 20 special dates over the course of a season. This season, however, 15 theatre companies will offer 50-plus dates, Hatfield said.
“We’re happy to be coordinating among ourselves to make sure we are not stepping on each other’s dates because I doubt the market exists yet for us to be in any sort of competition.” He describes instead a spirit of collaboration, with companies loaning each other equipment.
Hatfield points to Lifeline Theatre Company, which did one audio tour, one touch tour with audio description and one open caption performance for each of three main stage shows last year. “They have an amazing mission and one of the highest levels of customer services that I’ve ever seen – all on a modest, non-profit budget.”
Lifeline Operations Director Erica Foster said the 95-seat theatre “felt strongly about doing these performances so that everybody could enjoy our shows.
“Instead of us hiring the company that would do the open captioning for X amount of dollars, we decided to watch the sales at Best Buy, buy our own flat-screen TV for a couple hundred bucks,” Foster said. “Then myself plus an intern put together the slide show that has open captions.
“We’re teaching ourselves,” she said, acknowledging equipment borrowed from Steppenwolf. Volunteers also help, because “they find it more meaningful than just stuffing programs, to be able to have amazing conversations with people, to share our art.”
Risa Jaz Rifkind, program coordinator at ADA25 Chicago, sometimes uses a scooter but prefers to transfer into a theatre seat. She has dwarfism, so sight lines can be a problem.
Growing up in New York the daughter of an actress, she received theatre tickets for all big occasions, from birthdays to Hanukkah.
Rifkind goes to Chicago theatre three or four times a year. The last time she was accompanied by friends, one of whom uses a scooter and one who does not. She called ahead to Steppenwolf and was given the option of staying in the chair, putting it next to her or somewhere else, or going to movable chairs in the back that could be angled for better sight lines.
Theatres shouldn’t be nervous when someone with disabilities comes to the box office, she said.
“It is customer service all the way: that willingness to communicate with us in the disability community as to the best ideal situation for you to enjoy our show and to be willing to work with us, to say, ‘here’s what we have, here’s what we don’t have. Would this work?’ ”
Looking Ahead at Goals
When the Americans with Disability Act was enacted in 1990, “for the first time [it] enshrined in federal law that disability is a natural part of the human existence and the world needs to change a little bit to let us in,” says Marca Bristo, CEO of Access Living and co-chair of ADA25 Chicago, a 25th anniversary commemoration backed by the Chicago Community Trust.
The yearlong event encompasses not only inclusion (see main story) but also education and employment, both areas where people with disabilities lag behind those without disabilities, said ADA25 Chicago Executive Director Emily Harris.
Harris said ADA25 Chicago Co-chair Steve Pemberton brings sensitivity in hiring people with disabilities through his position as chief diversity officer at Walgreen Co., which has a Connecticut distribution center where more than 30 percent of employees have disabilities. The company found these employees could do the same job as everyone else so that the small investment in training was worth it; this knowledge could inspire hiring in Chicago’s large transportation sector, she said.
Increased hiring of people with disabilities is the right thing to do in a moral society, Harris said. Employment also leads to tax-paying independence instead of homelessness or institutionalization.
ADA25 Chicago events include:
July 17-18 Hackathon sponsored by Motorola Mobility Foundation will address issues in arts and entertainment, transportation, education, business and productivity.
July 18 Disability Pride Parade, whose grand marshall is former U.S. S“en. Tom Harkin, (D-IA) an author of the ADA. The parade steps off at 11 a.m. from Plymouth and VanBuren, heads west to Dearborn and north to Daley Plaza.
July 21 Job fair at the James R. Thompson Center
September date TBA “Renewing the Commitment” – free training for nonprofits on disability etiquette, facilities and communication via websites and technology.
Nov. 16-17 ADA 25 Chicago Opportunity Summit – reaching civic leadership about the achievement gap of students with disabilities in Chicago Public Schools and the obligation to do better so they do not fall by the wayside and become homeless. The Chicagoland Business Lea
dership Network will teach best practices for accommodating, recruiting and retaining people with disabilities.
Dec. 3-6 Leadership Institute for People with Disabilities legacy project – a matchmaking retreat between an inaugural class of fellows with disabilities and the non-profit or private sector boards that would like to have them serve.