Down the Tubes Productions

I do not shy away from stating, asking, requesting and demanding what I need to access, understand, participate and partake in this lifetime as an individual with a hearing loss. 

I have a loud speaking voice, and I’m not afraid to use it. 

And self-advocacy is a personal specialty. 

The casual observer will see someone with a bold demeanor, high standards and an air of expectation that the requested accommodations and modifications will be put in place regardless of the opinions or preferences of others involved. 

This same observer will likely be taken aback by the internal dialogue that occurs each and every time a request is uttered. The implementation of the alterations – however necessary they may be – do nothing to squelch the inner emotional weight I carry each time I ask for help. I struggle mightily with a range of emotions including guilt, grief, frustration, anger, bewilderment, resolution, and overwhelm at any given moment. 

The following is a non-exhaustive collection to illustrate the external/internal push and pull that I contend with each and every time I engage in an act of self-advocacy to manage this unpreventable, persistent and degenerative disability: 

Talking with Coworkers: 

• What I need to say: “Can you please repeat that?”

• What I wish I could say: “I know this is annoying to have to say something over again because I didn’t hear you the first time.” 

Talking with Students: 

• What I need to say: “Remember to look at Mrs. Lane and speak a little louder – your words are important and I want to make sure that I can hear you – “ 

• What I wish I could say: “You’re already working so hard at school today, and I feel absolutely awful about asking you to do one more thing – “ 

Talking on the Phone with Parents and Caregivers: 

• What I need to say: “I’m sorry, I didn’t quite catch that – would you please rephrase it?” 

• What I wish I could say: “I promise you that my hearing loss is not impacting your child’s education, but I’m not sure you believe that – “ 

Chatting with Acquaintances: 

• What I need to say: “I am going to move as it is easier for me to hear if you are positioned on my left – that ear is relatively stronger.” 

• What I wish I could say: “I know you don’t know me well, so I am trying to not be too much of a burden so I’ll make the accommodation on my own – “  

Navigating Salespeople: 

• What I need to say: “Please look at me when you speak so I can read your lips – “ 

• What I wish I could say: “Goddamnit, I am so tired of saying this over and over today even though I know I have to and I don’t want to be rude – “ 

Dealing with Customer Service: 

• What I need to say: “Would you mind if we kept our communication text-based using email or text messaging? It would be easier than using the phone – “ 

• What I wish I could say: “Your job is already hard enough, I am sorry that I am adding another layer of inconvenience – I’m not enjoying this interaction anymore than you are“ 

At a Restaurant: 

• What I need to say: “Would you mind switching seats with me? It would be easier if I could have my back up against the wall to absorb the sound – “ 

• What I wish I could say: “I feel terrible about having to make this change in seating – because while it will help my enjoyment of our time here, I probably just made your seating uncomfortable -” 

At the Doctor’s Office: 

• What I need to say: “I’m hearing impaired, use two hearing aids, and will let you know if I need anything repeated. Thank you so much – “ 

• What I wish I could say: “I appreciate you repeating things for me the first time…but why do I have to reiterate my need for a repetition every 3 minutes?” 

To My Friends: 

• What I need to say: “Do you guys mind if we put the captions on? It would be easier for me to understand the movie -” 

• What I wish I could say: “I don’t know if I could be this patient, and I honestly don’t know why you keep me around – being my friend seems like an awful lot of work – “ 

To My Family:

• What I need to say: “Would you help me with….(insert a million things)”

• What I wish I could say: “I’m sorry, I know I’m a burden.”

To loosely borrow phrasing from Vince Lombardi, famed coach of the Green Bay Packers and next in line to Frank Sinatra in Julie’s idolization – “Advocacy is not a sometime thing; it’s an all the time thing.” 

Oh, how I wish it was a sometime thing.