By Paul Kahn
Many years ago, shortly after I had started 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 performers and audience, it can still make me self-conscious and afraid of annoying people.
Other vent users have had similar experiences. Betsy 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 music performance: “A fellow patron of the arts during intermission turned around, pointed a long, bony finger at me in the back of the auditorium 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 other people in 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 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 accommodation 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 quiet level is essential to a performance. It’s going to be different for a rock concert than it would be for a string quartet or for a theatrical performance.”
Gips also makes clear that the noise made by life-sustaining equipment is a different issue from other kinds of noise, such as a barking service 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 has spinal muscular atrophy and 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 or any other disability-related equipment should never ever be a reason to exclude people from attending concerts or shows.”
Barbara Rogers of New York, who has kyphoscoliosis and 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 solution 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 a fundamental and therefore unacceptable alteration and, as such, cannot be permitted.” Her idea of a reasonable accommodation is “a separate, soundproofed or remote room with video and assistive listening devices.”
To me, lumping people with disabilities in with crying babies is incredibly insulting. And segregating us as though we were contagious is not much better. It might be true, as Barbara Rogers says, that “people pay a lot of money to go out and get away from reality,” but why should we give in to their prejudice? Another argument against separation is that it robs us of one of the unique things about live performance — its communal aspect. Sitting with hundreds of other people and laughing at the same jokes in a comic play, or being moved in similar ways by beautiful music, unites us as human beings in a way we don’t experience anywhere else, except in church, temple or mosque.
Luckily, there are many others in performing arts management who really want us to be audience members. The way they handle any complaints about the noise of respiratory equipment — and I think this is best — is to move the person complaining to a different seat. Rae Atira-Soncea, accessibility coordinator at the Overture Center for the Arts in Madison, Wis., follows this practice and teaches it to a staff of 500 volunteer ushers. “We train them to be very sensitive to the issues that come up and to be aware of each person’s right to attend the theater with dignity and independence,” she says. Sometimes equipment users feel uncomfortable and ask to be moved. If it is their idea, Overture staff will move them, “but we never ask them to move. Our staff is instructed to tell them, ‘that’s so generous of you to offer to do that.'”
Some theaters also try to sensitize performers. Deborah Knox, house manager at City Theatre in Pittsburgh, says, “When I see a patron with any type of breathing apparatus, I simply tell the stage manager to alert the actors that they may see a light on a machine and may hear a rhythmic sound.”
The definitive solution to the problem of noise — quieter respiratory machines — lies with the manufacturers. Angela King, senior clinical director for Viasys/Pulmonetic Systems, makers of the LTV ventilator, says, “We are continually striving to make our device quieter — and have been successful with our efforts.” She also points out that FDA regulations determine the volume of the alarms.
I disagree with King about ventilators getting quieter and actually think that the smaller, newer model ventilators are noisier than some of the older ones like mine. Barbara Rogers agrees with me. The way to progress, she says, “is to create a task force that would include the manufacturers. They are working more towards miniaturization for portability and medical outcomes, and they’re not necessarily thinking about the social aspects of noise.”
But I’m pessimistic about the manufacturers listening to us, because we don’t have the clout of clinicians who prescribe respiratory equipment or insurance companies who most often pay.
So, for the present, as Atira-Soncea says, “We need to educate our entire society that technology is helping people to be out there and independent. Let’s figure out how to live with it well.”