Cancer Control Society Is Toxic to Those with Invisible Disabilities

By: Loolwa Khazzoom, Founder, Dancing with Pain

September 8th, 2011 • Cancer Can Suck ItPrint Print

As I was preparing for surgery, I virtually met a woman who told me about the Cancer Control Society convention in Los Angeles, over Labor Day weekend. It was to be a gathering of leaders in the field of holistic therapies for cancer management. At the time, I thought I’d run out of time to take the holistic route. But as my path unfolded, I came to discover that the timing of the conference could not be more perfect.

As those of you following my blog know, this past year has been the hardest financial year of my life, as a result of two medical emergencies, including the cancer diagnosis. As I struggled to get back on my feet, my phone was turned off multiple times; I received an eviction notice; and the electric company threatened to shut off my utilities. Which all goes to say, the $1000 for transportation and accommodation was a hefty price to pay. But my health and wellness is #1 on my list of priorities. So, with the help of a friend, I managed to get my ass to the conference.

It ended up being a complete nightmare. While the presenters were sharing essential information about diagnosing and treating cancer holistically, I struggled with and suffered from listening to them. The speakers – two on either side of the front, and three along the sides of the auditorium – were at a volume that was too loud for me and caused pain in my ears as a result. I tried earplugs. The words were then too muffled to discern, on top of the sound remaining too loud.

Consider this: The sound was still loud, with 30 decibel earplugs in my ears. Statistics indicate Americans are losing their hearing at an all-time high. That’s probably because people choose volumes that are louder than necessary – at conferences such as this one.

After a day of attempting to resolve the issue, I approached the conference organizer, Lorraine. Ironically, as I stood in front of her and shared that the volume of the speakers was too high, causing me pain, she answered, “What?” – ie, she didn’t hear me, even as I stood right in front of her. I did not miss the humor of that exchange, and I chuckled to myself before repeating my concern — leaning in toward her face that time, to ensure she would hear me.

In a nutshell, Lorraine was apathetic, and I was left with terrible anxiety. In an attempt to resolve the matter, I wrote her a letter that night, with a cc to the organization president, Frank, and the hotel sound system manager, Ruth. I asked the front desk attendant to have the letters delivered to the respective individuals. The next morning, however, the letter to Lorraine was under my door, with a note “unable to find recipient.”

Since it’s self-explanatory, here’s the letter I wrote (minus introductory paragraph, where I flashed my media credentials and made it clear I was going to write about my conference experience).

Dear Lorraine,

I have come to this conference to save my life, after being diagnosed with cancer. It is of the utmost importance that I am able to participate in the assembly. Given the volume of the sound system during presentations today, however, I spent the day struggling and suffering – especially when one presenter literally yelled into the microphone, leaving me with awful nerve pain in my head for the next eight hours. At one point, I was so upset and frustrated, that I considered leaving the conference – despite the life-and-death difference it can make for me to be here. The noise issue is that big of a deal to me.

I spent the entire day attempting to resolve this matter. I kept having to disturb my concentration on what the speakers were saying, so as to alternately sit in different parts of the room, speak with the sound technician, and speak with conference organizers, in an attempt to resolve the matter. I also tried using earplugs, to no avail (the sound was still loud, but I could not make out what the speakers were saying.)

Because the issue was not resolved satisfactorily, I was distracted and in pain all day long. I also happened to speak with a couple of other individuals who agreed that the sound was loud. As is usually the case with people in groups, most of whom do not speak up, I am sure that there are additional individuals who have not said anything to conference organizers but who also would prefer that the volume be lower.

Since there are speakers positioned throughout the auditorium, I ultimately approached one of the conference organizers about a proposal for Sunday and Monday – namely, arranging for part of the room to stay at today’s volume and part of the room to be made quieter, for those who may have felt similarly disturbed by the volume. Since only a fraction of the chairs are being used at any time, people can move around as meets their needs.

This individual advised me to speak with you, which I promptly did. I understand that you were at the end of a long day and that you were probably very tired. Nonetheless, you did not appear to take my concerns seriously or compassionately, and you did nothing to assure me that you would make the space safe for my participation. Instead, you informed me that you are sensitive to loud music but that you did not think the volume here was loud. You then vaguely and disinterestedly offered to “check it out” tomorrow.

Given my experience today, I was left with tremendous anxiety about the rest of the weekend. When I approached you again (which was very uncomfortable for me to do), pressing to understand what exactly you intended to do to resolve this issue, you said you would listen to the volume tomorrow and, based on your own perception of the sound, determine whether it was too loud or not. I pointed out that regardless of whether you felt the sound was too loud, it was too loud for me. I emphasized how the volume was making my participation nearly impossible, and I burst into tears, out of frustration from my experience today and the uncertainty of the rest of this weekend.

You responded by saying that you could not rework the sound system based on one person’s needs. Really? Would you also tell a person in a wheelchair that because she was the only person at the conference in need of a ramp, you could not be bothered with the expense, effort, or nuisance of a ramp? If you do feel that my hearing is a matter of “hypersensitivity,” or disability, then I expect you to care about and assure me disability accommodation.

I am grateful to and have the utmost respect for you and your fellow organizers, for assembling the top thinkers in complementary and alternative remedies for cancer. I am here to benefit from their knowledge and resources, and to otherwise enjoy the conference – just like everyone else. And like everyone else, I should be able to do so without suffering.

Since Lorraine had not received my letter the night before, I hand delivered it to her the next day. She and her assistant responded in a way that was a combination of indifferent and outright abusive. I am too tired to get into that part of the story right now, but I’ll blog about it tomorrow.

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