Feeling Invisible

Written approximately 10 years after 2003 diagnosis

Despite the fact that I am a Caucasian woman in my sixties and part of mainstream society, I recently found myself in a situation in which I was on the outside, and learned first hand how it feels to be excluded.

I have Parkinson's disease. It is, for the most part, well managed with medication, but it has caused my voice to become soft and low. Talking on the phone to a stranger inevitably ends with "Thank you for calling, Sir". While conversing one-on-one in a quiet environment is manageable, making myself heard in a noisy environment is another story. So, when dining at a restaurant my husband has to order for me because the wait staff cannot hear me, and travelling in a car together renders conversation almost impossible because my voice cannot compete with the noises of the engine and the road underneath. When I try to speak more loudly it feels as if I am shouting, and it simply doesn’t work. It is both frustrating and exhausting. 

The vocal weakness is not new, but as it has become worse over the years, I have begun to admit to myself just how burdensome it is. So I researched and found a voice amplification system (created specifically for people like me) that actually enables me to speak audibly in noisy environments. Voila!    

But it is one thing to wear the embarrassingly conspicuous headset when I’m alone in the car with my husband; it is an entirely different matter to contemplate wearing it in social situations. So when I was recently invited to a celebration dinner for 25 people, the thought of wearing it and trying to explain to everyone why (or for that matter, not explaining why) left me feeling extremely uncomfortable. So I decided to leave it at home. Big mistake.  

In an atmosphere as noisy as a boisterous crowd of that size I didn't have a hope in hell. But - having experienced the effectiveness of voice amplification - the contrast was glaring, and I regretted my decision not to bring it.   

After several unsuccessful attempts to engage different people in conversation I simply stopped trying, and the hardest part was that it seemed to me that no one even noticed. I spent the entire evening fighting back tears, not wanting to attract attention or spoil the evening for others, so I sat at the dinner table with as cheerful an expression as I could possibly muster. Painful thoughts and feelings drifted in and out of my bruised psyche  - 'invisible' ... ‘don’t matter’ …  'ignored' ...  'unimportant' ... 'overlooked' ...  'peripheral' ...  If it wasn’t so upsetting it would have been an interesting and revealing experiment. 

The evening dragged, and the minute my husband and I left, the damn burst  (much to his surprise). I was indescribably relieved to be heading home to safety of my quiet life, and knew that on future such occasions I would wear the headset -  to hell with embarrassment!

But the whole experience led me to think about others who – for whatever reason – find themselves on the outside rather than on the inside. I remembered the countless times I heard my late mother (who also had Parkinson's) complain that no one talked to her or even looked at her. I had silently blamed her for not making the effort to participate. How wrong I was! And how painful that must have been for her.  

I thought about my hearing-impaired girlfriend who tells me how lonely she feels when people don't take the time to include her. I thought about shy people who are often ignored … and the so-called ‘geeks’ who are not part of the ‘in’ group … and those in wheelchairs, who are often overlooked in conversations. The list is endless.

So why do we do this to people?

Because it's easier? Probably. It takes thought and effort to include those who don't naturally fit in.  

Because we don’t notice that someone is being excluded? Maybe - after all, the squeaky wheel gets the grease.

Because we're too busy having a good time? Perhaps. After all, who would want to be the person who takes time out of a fun-filled outing, to include the excluded?

I would. Whereas I am fortunate in that I have been able to tackle my vocal problem with the use of technology, most of those on the periphery of mainstream society do not have such easy solutions. My painful experience taught me a lesson I won’t forget.