An excerpt from New Mobility,
September 2006 VENT USERS AT THE
PERFORMING ARTS
By Paul Kahn
Many years ago, shortly after I had starting using a Ventilator, I was sitting in my wheelchair near the back of a theater. As the lights dimmed and the play was about to start, a woman a few rows in front of me turned around and hissed angrily, "Who's snoring back there?"
The embarrassment of that moment has stayed in my mind ever since. Fortunately, in the close to 19 years I have been using a vent—now a Respironics PLV 100—there haven't been many others like it. But the fact is, ventilators make noise. The air intake whooshes, and the safety alarm that triggers if the pressure in the system is too high or low or the battery fails, is very sensitive. The noise, except for the shrill alarm, isn't very loud, so in most circumstances, it doesn't matter. But in a concert hall or theater, where you're supposed to be quiet for the sake of the performers and the audience, it can still make me self-conscious and afraid of annoying people.
Other vent users have had similar experiences. Betty Laitinen from West Roxbury, Mass., who has muscular dystrophy and uses a Puritan Bennett LP-10, remembers being at a play when too much congestion in her airways made her ventilator alarm go off. "The timing was really bad because it was at the climax of the show," she says. "It was embarrassing. Now I'm tentative about going to shows and afraid that the alarm will sound and shock people." And Tedde Scharf of Tempe, Ariz., who also has muscular dystrophy and uses a Pulmonetic LTV 950, writes in Ventilator-Assisted Living, the newsletter of the International Ventilator Users Network, about going to a solo classical performance: "A fellow patron of the arts during intermission turned around, pointed a long, bony finger at me and said loudly, "YOU should not be allowed in this theater!"
As more of us with severe disabilities are living longer and better, thanks to lighter, more reliable ventilators, and other equally noisy respiratory equipment, such as oxygen tanks and concentrators, these unpleasant encounters are happening more often. They bring up some important questions. Whose rights should win out—the right of the equipment user to go to a cultural event or the right of the audience to enjoy the event undisturbed? What are the best ways that theaters can
deal with these conflicts? What does the ADA say about this issue? What are the ventilator
manufacturers doing to solve the problem?
The ADA seems to provide general guidance but not much specific help about resolving the question of rights. Basically the law is supposed to make sure that people with disabilities have an equal opportunity to participate in any program or service and are not discriminated against on the basis of their Disability. So, performing arts organizations have to make "reasonable accommodations" to the needs of patrons with disabilities. As Kathy Gips, director of training at the New England ADA Center says, "The concept of reasonable accommodations" is really critical because it requires businesses and organizations to be flexible in terms of what somebody with a disability needs. The balance to that is, if a policy, practice, or procedure is fundamental to the way an organization performs its mission, then it does not have to make a modification. This gets down to what level of quiet is essential to a performance. It's going to be different for a rock concert than it would be for a string quartet or a theatrical performance." Gips also makes clear that the noise made by life-sustaining equipment is a different issue than other types of noise, such as a barking dog. "Service animals that are not behaving are not OK. An animal has to be under control of its owner."
So far it seems nobody has brought a suit under the ADA for being denied access to a performance because of noisy respiratory equipment. Until there are some precedents established, she believes that "this is a topic that reasonable people could have very different opinions on."
Among people with disabilities there are two camps of opinion—the hard liners and the compromisers. Laura Hershey of Denver, Colo., who uses a Puritan Bennett KnightStar 330, is a typical hard-liner. She says simply and flatly, "Everyone has the right to be in public spaces, regardless of disability. Respiratory equipment y other disability-related should never ever be a reason to exclude people from attending concerts or shows."
Barbara Rogers of NY, who only uses a ventilator at night, is an example of a compromiser. "We have to temper our rights with just being good public citizens and neighbors. We have to be conscious of our neighbors' comfort. Some people feel that they are willing to make concessions, such as sitting in a separate area of the theater. I am not opposed to that," she says.
A few theater managers, who I won't name because their opinions weren't given in a public context, want to take this separation issue even further. At least one I know has recommended that patrons with "noisy respirators" be told that the attendance of ANY noise-producing equipment, animal or human being—like babies—at a performance involving sound would be ...
