Down the Tubes Productions

An Extreme Extrovert’s Guide to Self-Advocacy 

Level: No Nonsense 
By: Julie 

Author’s Note: 

I have pulled no punches. I have written the best advocacy tips that I have used throughout the years in a list – in no particular order. If you are looking for soft language and placating encouragement, this is not the list for you.

1. Get over it. You are in charge of the narrative of your disability. You can choose to function with a disability or function as your disability. Own it. 

2. You know what you need, and others should not be in a “savior” position with the authority to make those decisions for you. Either speak up or sit down. 

3. You need to get comfortable disclosing your disability. It is messy, it is annoying, and in some situations, risky. Do it anyway. 

4. Accept and embrace the use of assistive technology. I railed against it through high school, college, and for the vast majority of my career. My ego overrode any available accommodation that could have made it easier and less exhausting for me to listen in large groups. I felt like I was “giving in” to something that society perceived as a weakness. I thought that I could manage it myself and I didn’t need such tools – they were for the weak among us. Well guess what? It is a lot easier to hear my students, participate in meetings, and enjoy television with assistive tech. And it is by far less exhausting. 

5. Have a “script” ready that you can trot out to share information about your disability. For example, when I meet someone new, I say the following: “Hello my name is Julie – just to let you know, I wear two hearing aids. I will let you know if I need you to repeat or rephrase anything as we are talking.” Having a script ready sets the expectation early with regards to defining your disability and clarifying best practice. 

6. Get comfortable with intrusive questions – either answer them in a way that feels safe to you or dismiss them.
   1. May I ask you about your hearing loss? How did it happen, were you born with it?
      1. Short answers work here – and then you decide how much to disclose or not 
      2. Do not shy away from setting a boundary if you do not wish to discuss your hearing loss. For example:  “I prefer to not discuss my hearing loss as it is the least interesting thing about me. Tell me about you – what is something I would be surprised to learn?” 

7. Be explicit in how you communicate and what will make the interaction most effective. For example, I request that people face me when they speak and share that I will let them know if they need to speak louder. I also ask people to position themselves to my left as it is my relatively “stronger” ear. If you use assistive technology such as live captions or an assisted listening device such as a “Roger Mic” (Phonak) or “Connect Clip” (Oticon), share how it works and what your communication partner can do to effectively use the technology. 

8. I have been fortunate in my education and work experiences where I have connected with colleagues that have become close friends, and are able to serve as an ally. These are people that I can exchange meeting notes with, triple check to clarify that I understood what was said during a meeting, and can ask to check my articulation if I am unsure of pronunciation of a word. Brad prefers the term, “Hearing Buddy” – which causes me to roll my eyes. I find it to be a “juvenile” term, and in my opinion it is a “dumbing down” of our agency as people with disabilities. It implies that the “hearing buddy” is playing a savior role and assuming responsibility with regards to making decisions about your accommodations. I am not a team mascot or cute little person that requires coddling, care, and a pat on the head. Get away from me.  

9. If someone is talking to you in a tone that you deem patronizing, correct them. For example, “It seems like you can’t hear your students in the cafeteria and you can’t miss your duty – what can we do together to fix that little problem?”  Nope. Do not tolerate this from anyone, we teach people how to talk to us. Our disability is not permission to be spoken to with disrespect and in a belittling manner – regardless of the intention of the speaker, the impact is insulting. 

10. Stop apologizing for your disability. There are a lot of people out there with personality traits that are less than desirable and they are not leading an introduction with “I’m sorry…”. It stops here. Change your language. You have nothing to apologize for because your body works differently.  

11. Advocacy is exhausting, necessary, and annoying all at once. It is made worse by the constant repetition and reminders needed each minute of every day. The frustration is heightened by people not internalizing your specific needs, and it is a constant repeated request even to those that know you best. Acknowledge that it is awful, but do it anyway. Your quality of life depends on it. 

A Thoughtful Introvert’s Guide to Self-Advocacy

Level: Respectful 
By: Brad

With apologies to Julie and Letterman, I can’t do a Top 10 List. Not on advocacy tips. I simply don’t have that many. 

Advocacy is a language. And like all languages you need to start young in order to become fluent. I started speaking advocacy in middle age. So I speak like a toddler. But y’know what? That’s ok. Because it beats silence.

My disfluency and my hesitancy means that I have to rely on passive advocacy tactics. I don’t have the courage or the energy to always speak up when I should. So I give myself tools. 

The first such tool is a button. I wear it at work and it says “Please be patient, I’m hard of hearing”. I don’t wear it just walking down the street but at work when miscommunication can lead to the wrong kind of excitement, the button helps. Now, if people in the library would just remember to read…

The second tool is my black and gold molds.This doesn’t always work either, I’m usually taller than my interlocutor. But, for me, advocacy is all about quantity over quality. As an introvert, that’s not what I prefer. Yet it’s the reality of my situation and so I lean into it. My molds occasionally attract a person’s notice and advocate on my behalf. 

The third tool is forgiveness. For others…and myself. I don’t do anger well (except when the Bs don’t shoot the puck on the powerplay) and if I get angry at someone for ignoring my advocacy, I can’t think straight. So I try to forgive the other person. But that’s the rarer sighting of the two forgiveness birds. More often I must forgive myself for not advocating for myself. I’m not great at it…yet. And beating myself up isn’t going to make me any better.

Dovetailing with forgiveness, is letting go of guilt. I know there’s nothing wrong with me, that not hearing well is not my fault. And so I know I need to speak up more. But still I don’t. And that leads me to feel guilty. I must also take care not to advocate rashly out of the desire to not feel guilty. Because that sort of advocacy is slipshod and ineffective, covered in timid and apologetic language. Which will lead me to ruminate over it afterwards and make speaking up the next time that much harder.

Ruminating, mulling, wool-gathering, whatever you want to call it, I’m an over-thinker. I need to stop it. I need to stop thinking about advocating in the moment and just do it. Overthinking is a hallmark of introversion. So what I have here is a prime example of how my deafness and introversion are all tied up in a Gordian knot. But I can cut that out by drawing on my Buddhist beliefs; specifically being mindful. My hesitancy comes from focusing on some amorphous future. If I can bring my mind to bear on the moment, then I can avoid overthinking. And I’ve been getting better, thanks to Julie. 

Since we’ve started the show, nay the friendship, she’s shown me what’s possible. I know I’ll never be the advocate she is and not just because she has a decades-long headstart. Her extroverted way won’t work for my introverted self. But I can use it as inspiration, as motivation, to find what works for me.

I was originally going to have Julie fly solo on this blog. Her list is extraordinary. Anyone would do well to follow it. But our show works because we’re so different. In the end I decided to give something that my fellow introverts could relate to. Find passive advocacy tools, try not to over think, and be kinder to yourself when those inevitable slip-ups happen. 

Advocate your way,
Be it passion or patience. 
No one-size-fits-all.

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