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Advocate Profile: Madeline Tuberty

Updated: Jul 3, 2020

 [Image of Madeline in a black wide-brimmed hat with red lips, pictured in front of a mural depicting Johnny Depp's character in "Edward Scissorhands"]

All my close friends and family know that I am a film freak, I love movies and I am a huge Johnny Depp fan so obviously this is my favorite mural in Midtown Sacramento, CA.

Photo credit: Zac Zavala Moonshot Photos

[Image of Madeline in a black wide-brimmed hat with red lips, pictured in front of a mural depicting Johnny Depp's character in "Edward Scissorhands"]

What is something people generally don’t know about you? One thing that a lot of people do not know about me and are surprised by is that I have a Cookie Bite Hearing Loss, which is a type of sensorineural hearing loss- which just means that I can hear high and low frequency sounds but struggle hearing mid-frequency sounds and as a result I wear hearing aids to accommodate for my hearing impairment. Another thing that a lot of people don't know about me is I can sing pretty well, despite having a hearing loss!

What gets your fired up about the disability movement? I am still new to advocacy and still discovering how I would like my hearing loss to define me, so I am sure that just like everyone else at this stage- I am excited to learn that there is this whole community of people out there just like me, that there are other people who have the same struggles and frustrations as me, that there are other 20-something-year-olds who wear hearing aids as well, so I'm not alone and I never have been. My next step is to fully embrace this community and become more active and involved in bringing awareness of all disabilities to more people.

What do you want those who do not identify with disability to know? Please be patient, and understand that even though I do wear hearing aids that doesn't mean my hearing is 100%- I'm still only hearing about 75% of the conversation and then I read lips to fill in the rest. I may ask you to repeat yourself several times if I am still not catching something, and I know it may be frustrating having to repeat yourself (trust me it's just as frustrating for me to have to ask you to repeat yourself), just be patient, work with me to understand what you are saying and don't be afraid to ask questions! Try and ask what you can do to make it easier for them- you never want to assume you know how to deal with someone else's disability or impairment without asking them about it first. A lot of people think "oh hearing loss, I just need to speak louder" and for whatever reason that doesn't work well with me (I mean who wants to be yelled at?) so, don't be afraid to ask to me! Most of the time I just need you to enunciate your words so I can read your lips.

What areas are you still growing/hope to grow? Personally? Professionally? I am personally still trying to work on becoming less insecure about my hearing loss and the somewhat visibility of my hearing aids (even to this day, depending on the situation I hardly ever wear my hair up in public) however I am slowly starting to learn that I can actually take control of the conversation or the topic of my hearing loss if it is brought up- lately though I've been more confident about initiating the topic, and as a result I am finding a positive reaction to it both, from me and the other person which is encouraging me to speak up about it mote. I also believe that society has changed so much in the last decade on how we treat/view people who are differently-abled, especially when it comes to the consideration of accommodating for people with disabilities, instead of the other way around- which makes it so much easier.

Who was the person/role model who inspired you to look into disability advocacy? Why/how did they inspire you? I think the obvious answer to this question is of course, my sister. The amazing, beautiful, talented Co-Host of this podcast, Sarah Tuberty. Growing up, I witnessed my older sister navigate her childhood, teens and young adult years with so much confidence and nonchalance for her Limb Difference, however unlike her, I do have the advantage of being able conceal my impairment to the point of where people can hardly even detect it- so that was the one juxtaposition in our disabilities that I have always admired about her. She doesn't have the choice to hide it, and people will stare and ask questions- but always ALWAYS she has handled it with so much confidence, eagerness to educate and pride. Everyday she inspires me, and because of her I am finally making the choice the stand up and tell the world about my disability, in hopes that one day I might be able to inspire someone else, like she has done for me. (P.S. I LOVE YOU SARAH <3)

How do we follow you?! Feel free to follow my instagram page @madtubbin

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