The day I became disabled

 Something glorious happened to me the other day. I grew in one of those time-stopping, crystalized ways that happen when reality smacks you in the face, pushes you down the stairs, and then laughs about it. I am not one to let a bully get the best of me. In fact, I am quite capable of defending myself because I not only have the sense to take the high ground, but the resources and advantages to do so. And I found that advocacy through love rather than anger works best for me, although it may not work best for everyone in all circumstances. 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.

4 thoughts on “The day I became disabled

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