As someone who has spent their entire life proving the doubters wrong with regard to disability, I am not surprised at the way things are going. When you live in a world where a baby’s potential value is judged within days after birth, it’s not surprising that some people would rather we just disappeared (or died).
I was born in 1979 in Texas, of all places. Apparently I came out the blue and it took a lot of work to keep me alive the first night. At least one doctor told my parents that even if I lived I’d be blind, deaf and intellectually disabled. Thankfully there was another doctor who said I’d most likely be fine. There’s even a story that I kicked out the sides of the incubator I was in at one point. Here I am four and a half decades later, and while I’m hard of hearing, have a facial disfigurement and vision issues, there’s no sign of an intellectual disability. Not that it should have mattered. All lives are worthy – having an intellectual disability shouldn’t have meant I was better off dead or institutionalized either.
A large issue with having to prove doubters wrong is the way we have to constantly prove our worth. Things like excellent behavior, getting the best grades in school, going to college, graduating with distinction, getting a good job and doing our best at it, are all signs that it is worth keeping us alive. We’re proving our worth to a society that thinks we shouldn’t exist at all. We shouldn’t have to prove anything – a disabled person who doesn’t do well in school or a job and struggles with everything shouldn’t deemed less worthy than someone who is successful. You only have to take one look at media that glorifies successful disabled people and says things like, “they never let their disability stop them” to see the truth. In reality it almost never is our disabilities stopping us. It was the ableism of society making assumptions about our worth.
It’s not surprising that society also judges people based on their relationships. We’re supposed to date, get married and have kids all for the betterment of society. And of course, we must find someone of the opposite gender to do all of this with. Any deviation from that norm is seen as abnormal and wrong. Unfortunately, there is an assumption that disabled people are exempt from this because we’re not worthy enough to date, get married or have kids. As a result, some disabled people may strive to prove that assumption wrong by doing exactly what is expected.
Those of us who are asexual and/or aromantic are often assumed to be that way because of our disabilities, which causes conflict in both groups. The truth is we are asexual and/or aromantic while also being disabled, and not because of it, and there shouldn’t be anything wrong with that. I’ve known for years I was asexual – I never had any interest in dating or anything. Aromantic was a word I learned more recently and also fit. There isn’t any particular reason why I am asexual and aromantic, I just am.
Gender has always been something in the background for me, as being hard of hearing and dealing with that – and other issues – took up most of my focus. I had to navigate communication issues with everyone, almost all of the time. It’s not fun having to remind people that I am in fact hard of hearing, even with my hearing aids on. As a result I never really thought about it all that much, other than knowing I didn’t enjoy typical girl things. I didn’t like dolls or makeup or bright colors that girls are often expected to like. But it is also true that my parents never really made that much of a big deal about it.
Within the last few years, I’ve really come to understand what being non-binary or agender means, and realized that it describes me. Agender probably fits best as I don’t really feel particularly drawn to any gender specifically. Having said that, I generally don’t mind female-gendered terms, with some exceptions. I don’t particularly like being called lady, as an example. On the flip side, I would much rather be called my parents’ daughter than child, because I’m an adult and the word “offspring” just sounds weird. But these are my own personal preferences – everyone else should be allowed to describe themselves on their own terms.
As I said at the beginning, I’m not surprised at the direction we’re going right now. And as I work out my gender and learn more about the trans/non-binary communities I see the same battles and the same struggle to be allowed to exist. I recently read the article “The fight against ableism mirrors the fight against transphobia” written by Ayman Eckford at PinkNews, which has a lot to say about what’s going on. Anyone who doesn’t fit the assumed norm is under attack right now by the current administration, and as always it’s about ableism:
“Throughout history, ableism has been used against women to justify gender inequality, against Jewish people to justify the Holocaust, against people of colour to justify slavery and colonialism, and, of course, against the LGBTQ+ community.”
I am Jen Rohrig. I am hard of hearing, asexual, aromantic, agender and likely autistic. Proving the doubters wrong is the goal every day. Existing exactly as I am is the goal every day. I believe we all deserve to be able to be exactly who we are and exist as who we are, because we’re all human, with our various identities and differences.
Reading List
- “Disability Visibility: First-Person Stories from the Twenty-First Century” edited by Alice Wong
- “Being Seen: One Deafblind Woman’s Fight to End Ableism” by Elsa Sjunneson
- “Black Disability Politics” by Sami Schalk
- “The Future Is Disabled – Prophecies, Love Notes and Mourning Songs” by Leah Lakshmi Piepzna-Samarasinha
- “Ace and Aro Journeys: A Guide to Embracing Your Asexual or Aromantic Identity” by The Ace and Aro Advocacy Project
- “Gender: Your Guide: A Gender-Friendly Primer on What to Know, What to Say, and What to Do in the New Gender Culture” 2nd Edition by Lee Airton (make sure to get the 2024 edition)
- “Ace: What Asexuality Reveals About Desire, Society, and the Meaning of Sex” by Angela Chen
- “Refusing Compulsory Sexuality: A Black Asexual Lens on Our Sex-Obsessed Culture” by Sherronda J. Brown
- “Ending the Pursuit: Asexuality, Aromanticism, and Agender Identity” by Michael Paramo