The COPD Community Won’t Be Ignored

August 19th, 2011 | Author: Katelyn Turner

The other day, we posted a blog about an article that New York Times reporter Mr. James Oestreich wrote, which was supposed to be a review of the “Mostly Mozart Festival.” What Mr. Oestreich decided to write about instead was a long complaint about an individual sitting behind him, who he said disturbed the performance because of his portable oxygen device.

From the article:

“I leave it to reviewers during the season to describe specific ways in which Stravinsky’s Neo-Classicism (actually, as much neo-Baroque as anything else) may relate to Mozart’s Classicism. And I hesitate to delve further into details of the performances, because I was thoroughly distracted throughout.

The man seated directly behind me was connected to a portable medical device, presumably an oxygen cart to aid his breathing, that emitted a steady ticking. Hard to describe, it was really more a faint, dull metallic clank in a relentless rhythm that seemed somehow resistant to all the many other rhythms emanating from the stage.

I have no idea how many people heard it: 4 or 5 immediately around, 15 or 20 in the vicinity? And I have no idea how I would have reacted if not for a worrying experience of my own last year. As it was, I found it impossible to ignore.”

The COPD Foundation decided to send a letter to Mr. Oestreich and other editors at the New York Times, to express our displeasure. We did, and they reached out to to interview us further on the matter. Here, you can read the article on their website, Well Blog.

Below is the letter from our President and Co-Founder, John W. Walsh, to the editors of the New York Times:

Dear James Oestreich,

I am writing to you on behalf of not only myself—an individual with a genetic form of Chronic Obstructive Pulmonary Disease (COPD), Alpha-1 Antitrypsin Deficiency (Alpha-1)—but on behalf of the 24 million Americans also living with COPD.

Alpha-1 is currently the most significant genetic risk factor for COPD, and it may also cause liver and lung disease.

Of these 24 million Americans, only half know they have COPD—an umbrella term used to describe progressive lung diseases encompassing emphysema, chronic bronchitis, refractory asthma and severe bronchiectasis.

After reading your August 1st article titled, “A Faint Sound at a Concert, but Impossible to Ignore” I was appalled and angered. I found it disappointing that you took the opportunity to promote a negative connotation of those (myself included) who use supplemental oxygen. For those of us who use supplemental oxygen, it can be a mental and physical challenge that’s hard to overcome in order to have a decent quality of life. We are already self-conscious about using this equipment in public; and now I read your story about intolerance over an assistive device over which patients have little control.

While I agree with your sentiment about cell phones and people’s conversations disrupting a concert; those are all things that can be controlled. My ability to breathe is sometimes not. It’s not only unreasonable, but damaging to tell an individual to turn off their prescribed supplemental oxygen, because it might be a slight bother to you.

Worldwide, 210 million people suffer from COPD. Are you telling me that those who use supplemental oxygen should not be allowed to participate in the arts for their enjoyment, because of their supplemental oxygen? We refuse to sit quietly in our homes just because a few people might have issues with the slight noise a portable oxygen concentrator might make.

I know that many individuals with COPD would love the possibility of a completely silent portable oxygen device—in fact we’d like that as much as anyone. But the reality is, that doesn’t exist currently, and in the meantime, we will continue living our lives—on supplemental oxygen or not—despite what others might think or say. We have just as much a right to enjoy concerts and public outings as anyone else, and your words have deeply offended our entire community.

But, I believe everyone is capable of having a change of heart. I would love to speak to you personally about my experience and condition at our COPD Awareness Night with the New York Mets this Saturday at Citi Field. My organization, the COPD Foundation, and the Mets have come together for this night to bring awareness about the third killer in the U.S., and to honor a longtime Met executive, Bob Mandt, who passed away from COPD last year.

The COPD Foundation will also have our COPD Shuttle: Journey to the Center of the Lung, 20-seat motion simulator capsule at the game. This ride takes the audience on a 5-minute journey through the lungs to see the harmful effects of smoking, up close and personal.

I invite you to join us on this night, and perhaps you can learn a little more firsthand what it’s like for us to live with COPD every day.

Sincerely,

John W. Walsh

President and Co-Founder of the COPD Foundation and Alpha-1 Foundation

7 comments

  1. The OxGnator says:

    I am a COPDer and I thank The COPD foundation for sticking up for us. We dont criticize people when thay are smoking on a bus stop we move away, we do not react when we are stared at and most of all we dont complain about thier disability (ignorance)when they dont understand that some of us need O2 to live day by day and just because we are on O2 that we dont get aggrevated from the clicks,humming and ignorance we deal with daily. Thank you COPD foundation for speaking up for us. ^J^

  2. ken benson says:

    I’m afraid I don’t quite understand the controversy.
    Are you saying that disabled persons do not have the right to experience culture as the non-disabled?
    Did the sound of the oxygen concentrator bother someone? Did they consider the bother to the person having to use it to stay alive?
    I would suggest you leave your culture at the doorstep and instead exhibit your humanity.

  3. [...] Oestreich’s examination triggered a exhilarated response from John Walsh, boss of a Chronic Obstructive Pulmonary Disease Foundation, who in a minute to The Times criticized a essay for a miss of sensitivity, observant it promoted a [...]

  4. [...] Oestreich’s review triggered a heated response from John Walsh, president of the Chronic Obstructive Pulmonary Disease Foundation, who in a letter to The Times criticized the article for its lack of sensitivity, saying it [...]

  5. [...] help?Mr. Oestreich’s review triggered a heated response from John Walsh, president of the Chronic Obstructive Pulmonary Disease Foundation, who in a letter to The Times criticized the article for its lack of sensitivity, saying it [...]

  6. Jeff Mahon says:

    Well done, John. Thank you for once again taking up the challenge of informing a sometimes insensitive public to the many facets of our difficult condition.

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