By Lani Gering
Chou Chou Scantlin – Blissfully Being
I have to confess that my interview with Chou Chou was a little unconventional in that it was conducted solely via email. My preference is to be face to face with my subject matter since I think you get a better feel for who they are but this was different. When I contacted Chou Chou about being profiled for this issue and asked where and when we could meet, she very openly told me, “Because sensory processing, and the hypersensitivity challenges when not home or on stage, are, by far, my greatest challenge, the best way for me to work with reporters or interviewers is often by email. Granted, there is nothing like real life connection, but I can never guarantee how well I will manage the environment. I adore people and have not one shred of social anxiety, and, obviously, no shyness. I just take in the environment with no governor; no filter. I jokingly refer to it as “Cat in the Washing Machine Syndrome”.”
Chou Chou is autistic. She is very open about the struggles that she has had and is also a huge advocate for those who share those struggles. This is when I decided to take a bit of a different turn with the profile. Instead of concentrating on the very obvious and over the top talent that Chou Chou has I wanted you to get to know her. She very graciously gave me permission to access her blog “Blissfully Being”. The following is a portion of one of her first entry in March of 2016.
“Conflict has always been my kryptonite. I am a very polite person. I am also a professional entertainer. So when, rather reluctantly, it was revealed rather publicly that I was an autistic woman, I found myself caught in the spotlight of a curious new branding. I was befriended by many members of the autism community and the larger disabilities rights movement, as well as parents and educators of autistic children. And I never felt lonelier. There is a school of thought that says identity is a combination of how we see ourselves, how others see us, and how we think others see us. Being suddenly seen as autistic did not change how I saw myself, but decidedly changed how others saw me, and it didn’t take long until my idea of how I thought others saw me changed drastically. That changed my view of myself. My genuinely happy demeanor was seen as masking my suffering. My challenges were to be pitied. Some of my most mediocre endeavors were celebrated as inspirational, considering how “damaged” a person I was. Some people stopped talking to me directly and chose to address my husband instead. The worst moment of all was when someone actually patted me on the head and, with baby talk so I would “understand” her “kindness”, said to a stranger, “And here is our special girl”. I was frozen in shock. After all, I was still the same person as before being seen as autistic: a mother, wife, producer, performer, darn good cook and life hacker, smart in some things and not so much at others, tempered, like others, by a life filled with my fair share of joys and sorrows. I think I live a winning life, even by the most neurotypical standards, so this new pity and patronage was something I felt I didn’t deserve. After all, I was not disabled. I certainly did not consider myself a valid representative of disabled people, or even other autistic people. I did things differently, faced certain challenges, but didn’t everyone? Besides, I was great at hiding mine. So I sucked it up, politely, continued to congratulate myself on taking the high road and moved on. At the same time, I saw my Facebook newsfeed fill up with more and more advocates of Disabilities Rights, many angry, young, and fired with passion to change the world. Some even attacked me, for they seldom held back anything for the sake of tone or manner. Some, I cheered on, with great admiration, for they were trying to make positive changes. Others had challenges far different from mine, and I could not relate to. I certainly was no expert on their plight. I was encouraged to add my voice to the mix, as a fellow disabled person. But, I thought, I am not disabled! I am winning at life! I cannot speak on behalf of this group, for I am not of this tribe. And then something happened, and I gloriously was. I was sitting in the kitchen of people I love, sweet, kind, loving relations with pure hearts. I have never known them to have anything but the best of intentions. The conversation drifted to them speaking of their church, and one of these sweet and gentle relations expressed how awful it was that the church had been “forced” to put a wheelchair ramp to the pulpit, and how it ruined the look of the altar. I had that same stunned shock as when I was patted on the head. Did he not think, I asked, that all members of the congregation had a right to access the pulpit, since members regularly use it as part of the service? He said, with a now-familiar patronage and pity, that “we” would be happy to carry one of “them” up to the pulpit and that “we” should not have to put up with this unsightly ramp for a few of “them”. Besides the obvious problem being the poorly designed ramp, it did not occur to him that he was speaking of my friends as inconvenient. Time stopped for me. I thought of my advocate friends, of the “we” and “them”. I thought of how far more I related to “them” now, and the laughable, horrible, injustice of thinking of access and dignity and rights of humanity as inconvenient. Time stopped, and I grew. I understood why my young friends were fighting so hard. If such loving, gentle people as these relations could think this way, what did my disabled friends face by those less kind daily? If I, with my mostly invisible but very real challenges, oh yes, now I’ll say it, disabilities, have had my dignity stripped by a pat on the head, what imprinting of indignities did they face? Not to mention all the other groups labeled as “them”. Kind intentions towards “them” is not a valid justification for the othering. There is, in reality, only the “we”. We are all human, all worthy of access and dignity, and not inconvenient. And so, proudly, I am now disabled. And far more able to be part of humanity. We are we. There is no them. To not be able to embrace the idea of the unity of “we” disables us all.”
I met Chou Chou a few years ago when she and Doc were performing at the Carlyle Club here in Alexandria. We were attending the show and taking photographs for a profile that we were doing on Doc and the band at the time. It would never have crossed my mind that she was anything other than extremely talented, warm hearted and loving and a bit eccentric (she and Doc live a truly retro life in their “Bungalow on the Bay” near Annapolis) and genuine in every way. I have loved getting to know her via our email transactions and am looking forward to seeing her again soon. The Band will be performing at the Carlyle Club on Friday, February 16th at 8 pm to celebrate Valentine’s Day and Mardi Gras. Ticket information available at docscantlin.com and by contacting the Club at thecarlyleclub.com.