By
Sean Gold & Marissa Nasiatka

Our Interview with Sean Gold

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Image of a man who is black with a tracheotomy tube. He is smiling at the camera. He is wearing a white shirt. He has a beard and short black hair..

Sean Gold is a black, gay man with a disability. He is an advocate for people with disabilities and he has one Microsoft certification for web design. In 2020, Sean was elected as president of the disability-owned nonprofit organization, Coalition in Truth and Independence. He considers his faith, family, and friends the most important things in his life. Sean’s physical disability is cerebral palsy. He also has a tracheostomy breathing tube; it has been in place since he was eighteen months old. Even though Sean is nonverbal, that trait does not get in the way of his love of creative writing and storytelling. 

 

D&A: Can you share with us when you were diagnosed with cerebral palsy, what type you have, and why your breathing is assisted through a tracheotomy?

SG: I was diagnosed with Cerebral Palsy at 4 months old. The exact diagnosis that I have is Mixed Athetoid Spastic Diplegia, the athetoid causes shakiness, and the spastic diplegia makes me have spasms at random times throughout my body. This is also why I cannot use my left hand as much as I would like, and why I get fatigued faster than an abled bodied person.

D&A: What are some challenges, difficulties, or hardships that you have overcome? How can what you learned help others?

SG: As a person with a disability, I had to learn how to become an advocate. Not just for the disability community, but also for myself. I must know my own required accommodations needed. I must know how I am able to communicate the most effective way possible so that it’s easier not just for me, but for both parties involved. Just like with this interview and me needing the questions ahead of time, I do that to make the interviews go as smoothly as possible. So, I say to my fellow advocates or just people with disabilities in general to know your own accommodations! My two accommodations for podcast interviews are getting questions ahead of time and finding someone who can speak out what I write. I make it easy for them by having my answers below every question in a different text color.

D&A: In your Ted Talk, you touch on the topic of “inspiration porn” and how ableism is usually unintentional, but still a form of discrimination. Can you share some advice on how these topics need to be addressed in society?

SG: Yes, I think the best way people can determine something is inspiring by figuring out if the physically challenged or disabled person is doing something that is a part of everyday life just in an unconventional way. That includes walking, communicating, and driving, doing tasks at work, or anything along those lines. These subjects cannot be taboo anymore. We need to be seen by all aspects of life. We need Democratic president debate nights dedicated only to our community. The disability community has every minority and majority community in this country. George Floyd had an intellectual disability, and it was rarely mentioned in the media. People with disabilities are the minority only because we are ignored and forgotten, otherwise we would be the true majority in this country if it were not for abled bodied privilege and white supremacy. Why was George Floyd’s disability not mentioned in the mainstream media? Do we downplay disabilities unless it is a white American terrorist? The news tries hard to protect a white criminal and even treat him to McDonald’s!

D&A: You mention your disdain for the handicapped sign in your Ted Talk, The Obstacles of Disabilities. Can you share your viewpoint on this subject with our community?

SG: I am just not a fan of it. When you look at the universal sign, the stick figure is floating above the C that is represented as a wheelchair. There must be a better way to design it and have multiple symbols on it. That is inclusion. If you have only the wheelchair symbol, then that is categorizing all disabilities as one. On Google images, when people search up “Symbols of disability”, more than the wheelchair sign comes up. We see a deaf or hard of hearing symbol, sign language, Braille and so many others. We are not just a generic symbol.

D&A: In 2020, you were voted as President of the Steering Committee for the Coalition for Truth in Independence (CTI)? What does the honor mean to you? What are your next steps in leading the organization in the future?

SG: Well, with everything being virtually there is not much I can do right now in person. It was a true honor to be elected! I didn’t even expect to be nominated; I just remember my mentor all of a sudden, my mentor shouting out that he wanted to nominate me. Funny enough, he was the last president! I love it and the work that our organization is doing and will do in the future after this pandemic. We need to get out of this pandemic soon, God willing.

D&A: Working as an advocate and activist for CTI, what are some of the organization's initiatives regarding the healthcare system in the United States and the current state of the Medicaid program?

SG: We are trying to expand it for our needs. Living in a red state has its challenges because unfortunately the republicans seem to want to cut out everything that this community needs. There is a reason why the physically, mentally, and intellectual challenged communities are mostly Democrats. Let us just keep it real, neither have gave a damn about us since July 1990 when advocates before my time had to go to Washington D.C. and demand the ADA be signed into law! For reference, I highly recommend people watch “Crip Camp” on Netflix. It is an amazing documentary that former President Barack Obama and Michelle Obama executive produced. We are always fighting to increase our equality while trying to keep the little rights that we have. The Medicaid system is ableism at its core. Why should I have to choose him from my health care to keep me alive and making a great salary as a web designer?

D&A: In February, Upgrade Accessibility founder Mary Fashik hosted a 90 minute live streamed roundtable discussion regarding disability and ableism entitled, The Politics of Disability Roundtable: Disability & Ableism. What was it like to be a part of the distinguished panel which discussed “gatekeeping” in today’s society? 

SG: It is the best feeling ever. To know that I get to do what I am passionate about and to share the “virtual stage” with other amazing advocates just fulfills me. I love how everyone brought their own experiences to have the candid conversation that we did. We need more of these happening on the larger stages to be heard. We start off like we are, small, and then grow and grow into media. I want to learn about people in my community running for office, getting into the House and Senate all the way to the White House so that our needs can finally be important enough to make more change.

D&A: In 2020, the Black Lives Matter movement exposed systemic racism on a grand scale. How/When do you think systemic ableism will be addressed on a larger scale?

SG: So, this was kind of answered in the previous question. I say as soon as this pandemic is over or slowing down, this community needs to make so much noise like BLM needs to continue to do. However, right now we need to be focused on the Asian community and the threats that they are now getting.

D&A: As a young black male with a difference and part of the LGBTQ2 community, were their times in your life when you were affected by ableism, racism, and heterosexism concurrently? If yes, how do/did you deal with the multiple minority stressors that occur in daily life?

SG: I am definitely affected by Ableist behaviors the most. There was only one year in high school that I really experienced a “in my face” Ableist teacher. He was an older black gentleman, but that is no excuse for him continuously having a lack of understatement that even though I am nonverbal that I could hear. This teacher would say things to my nurse, Instead of me. Mind you, this is high school so there wasn’t much that I could do anyway and when I did it was a problem, and it was too late because the school year was over. What is unfortunate for high school students especially is that even when we speak up, hardly anything will be done. The bothersome thing that I realized was unless it is an “in your face” mean ableist or ableism that occurs, your complaint will never matter because “at Least They meant well.”

D&A: In your opinion, what is the most significant outcome of the House of Representatives passing the Equality Act?

SG: It just shows how America is slowly moving towards inclusion. As a gay man, I should not be discriminated against just for who I love. America LOVES discrimination. I just hope that the senate Democrats are strong enough to fight for this needed law. It was scary knowing that our rights could have been taken away completely. Trans military rights should not have gone away. If a person wants to protect America, why would a person’s gender identity be a problem? It just proves that republicans care about how an army or military base looks more than “protecting our country” as they claim. More equality only gets rid of white supremacy and that is the only goal!

D&A: You are a successful web designer, motivational speaker, and advocate. When did you decide that you also wanted to become a fiction author?

SG: As a public speaker and author, I have always loved writing. Ever since I was little, I have always preferred writing my own stories over reading. It comes from the sense of never liking to read, but would always email my family my "finished" 1-2 paragraph stories proudly awaiting positive feedback. For me, writing is like an escape. Whether it's fan fiction, role play, or even something for English class, it allows me to be expressive. Furthermore, since I am nonverbal, I am always typing on a device (phone, computer or some type of communication device) to be involved in the conversation going on. For someone like me, writing is not second nature, it is my first.

D&A: Can you tell us about your book, Pure Love, Or Is It?

SG: My debut book is about a sexual assault (Or rape) gay male victim. His best friend, who is straight but could be classified as bi-curious, wanted to have sex with him and things never are the same. It deals with the aftermath of being a victim of a taboo issue in this country with the road to recovery. People should also be able to see how strong minded the main character is and experience the mind of the predator. My book is available on Amazon and Barnes N Noble today!

D&A: Besides writing, what kinds of things do you love doing in your spare time?

SG: I am a total gamer! I love The Sims (even though lately the company has been putting ridiculous content right now), The Real is my favorite snow on TV and I love YouTubers! The Terrell Show on YouTube is the best and I entered his contest to be on his show. I am waiting to hear if I made it in the top ten. Of course, I text friends all day long!

D&A: What would be the title of your autobiography, if you ever choose to write one, and why? 

SG: I am not sure! To be honest, I know people want my autobiography, it will be the top question from now on. However, my passion is in fiction. I love how I can make my imagination come out in words onto paper and have no limitations. For “Pure Love, or is It?”, I had to search up many laws and the legal process to make sure that part was hard, and it took a long time! The process is not going to be like that for a memoir which sadly does not grab my interests or inspiration. Maybe one day, but not anytime soon.

D&A: You have put in a request for a guest spot on the Terrell Show, a YouTube based show that is filled with music, comedy, reactions, and the occasionally sassy game show. Besides your humor and your great smile, what do you want to bring to the show?

SG: I love all of his content, especially the Song Association series! The first thing that I would bring would obviously be my music knowledge! I mean, that is what the contest is about! I would have my friend who is a singer be the one that sings the songs that I’ll think of. Of course, I will talk about my debut book and my disabilities. I just adore Terrell and his personality. As a gay black man, I look up to him in so many ways!

D&A: There are so many video games out there, what draws you to The Sims?

SG: I love to play with life and build houses! If I had a better computer that could run The Sims smoother, I would be on it way more. 

D&A: Do you have any other books in the making?

SG: I have an idea written down, but for now I am taking a break! I am sure before the end of the year I will be writing the next one. 

D&A: What would you like the universal sign of disability to look like? How would you decide what symbols to include?

SG: I think there should be at least nine symbols on the sign. There are too many symbols to be able to include everyone, but it should be nine symbols. Maybe one for blind, hard of hearing or deaf, a better wheelchair symbol, and nonverbal just to name a few.

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