The Pros and Cons of Having a Non-Visible Disability: A Conversation with Kari and Louisa

Louisa, an autistic woman, and Kari, a woman with cerebral palsy (or “Ceep” as she likes to refer to herself in community with other “palsy people”) recently got together at Meriah’s invitation to discuss the pros and cons of different kinds of disability, as follows.

LOUISA

PRO: I can choose who knows.

Because people cannot know I am disabled from seeing me, I have the freedom to choose to not tell some people that I am disabled. This allows me to choose privacy, and means I do not have to deal with intrusive questions from others as often.

CON: Disclosure is an event.

The drawback to choosing who knows about my disability is the fact that I have to tell people. This means I have to weigh the decision every time. Do I tell my boss? My coworkers? My professors? If so, when is the right time? Before or after I mess up?  Should I wait until I’ve proven my capability first and risk them getting the wrong impression due to my autistic mistakes, or is it better to have them know I’ll mess up and prove my ability after? The decision is a minefield, especially with a social disability.

KARI

PRO: I can disclose easily.

Once I do get up and start moving around, it’s usually easy for others to figure out that there’s some kind of disability situation going on. Now, I try to take advantage of this general awareness in order to talk freely about my needs. Before, because I always felt a certain pressure to “pass,” I would disclose before I really needed to, and/or before it was relevant. It took me a long time to get comfortable with just sort of letting my situation speak for itself, as well as with speaking up on my own behalf, because of the following:

CON: People get it wrong!

Unless the cause or genesis of a disability is immediately obvious or presents an easily arrived at conclusion–even if it’s the wrong one, as in, “Oh, you’ll be okay, I broke my leg too,” (What’s really going on with my leg is CP!)–people feel almost obligated to figure it out or make me “okay” in their world. Like I’m some kind of threat if they can’t put their own finger on what exactly the disability is. This often makes it practically impossible to disclose in a general way, so that I end up being somebody’s teachable moment. That’s not what I want when I’m just trying to get through the day like everybody else.

I used to feel a keen sense of responsibility to make people feel comfortable with me and my CP. I’ve had to learn that it’s no more my job to present myself for their inspection or approval, than it is theirs to figure me out in the first place. At long last I realize that the assumptions people make, and the conclusions they jump to, don’t have to be my problem.

LOUISA

PRO: I can avoid prejudice.

Because no one can see my disability, I do not have any direct issues with accessibility, nor do I have to deal with preconceived ideas from strangers and acquaintances. Because I do not usually have to ask for help from others I do not have to carry the weight of other people’s prejudices about disabled people.

CON: I get judged for things caused by disability.

On the other hand, when I do mess up (And because I’m autistic, this happens a LOT!), if people don’t know about my disability, they will think I messed up because I am mean, lazy or rude.  Revealing my disability after the fact runs the risk of being perceived as “making excuses.”

KARI

PRO: I can ask for help more easily.

Now, when I need something, I just speak up. Whether it’s asking people to move out of the way of stair railings, or for a hand up and over a curb, I do it. Moment to moment, people I ask are usually just too polite and/or preoccupied to do anything other than help. I also try to make clear exactly what I need. This works–at least until it backfires:

CON: I struggle with setting boundaries.

Sometimes, just because I ask for help with one specific thing, doesn’t mean I need help with all things. When people don’t realize this, it’s very easy for them to just jump in and start doing everything for me. At moments like that, it’s very challenging for me to make myself heard. The upshot is that while people take my needs seriously, they don’t take my abilities seriously.

LOUISA

PRO: My ability is assumed.

Because people can’t see my disability, no one assumes I am not capable.  I don’t have to deal with the assumption that I am not capable and need help.

CON: My requests for help are not taken seriously.

Regardless of whether I have disclosed or not, if I need help it is rarely available, or if it is, I am criticized for asking for it. Because I don’t appear to be neurodivergent, when I ask for extra processing time, or clarification, clear instructions, or understanding for issues caused by disability, I am told I exaggerating, making excuses, or just plain scoffed at. This makes the world an extremely lonely and scary place to navigate at times.

 

Ultimately, our society sees all disability as a drawback.  By recognizing both our similarities and our differences we can advocate more effectively for ourselves and for each other, to create a better world for everyone.

KARI

Whether our disabilities are visible or invisible, getting non-disabled people to humanize and contextualize our needs–and our abilities–is a huge difficulty.

Helping does not have to be an all-or-nothing proposition.

Recognizing need does not have to mean discounting ability, and vice versa. I think if everybody understood this, it would pave the way for much greater understanding not only between people with and without disabilities in general, but also between folks with different kinds of disabilities.

That’s a big part of why I wanted to do this piece. I’ve had huge misunderstandings with some invisibly disabled friends of mine before, which could have been resolved so easily if I’d taken a little more time to look harder at specific issues facing them, instead of trying to use my own context to figure theirs out! I’m grateful for the chance to collaborate with Louisa on sharing the struggles we face, each and both. It isn’t just that we’re not as different as I would have thought, but also that our unique difficulties come from the same basic set of misunderstandings we face from the non-disabled world.

Looking at our pros and cons has helped me realize how we can better support each other from now on!

Kari is a disability activist from Los Angeles.

After 10 years teaching English as a Second Language (ESL) in her native city and around the world, she’s decided to pursue other things, including her freelance writing and editing career.

You can reach her by email. Read her recent writings on Writing the Tao  and The Pope of Pop.

Louisa is a 30 year old autistic nursing student.

She has spent her life learning how to thrive in a world built for neurotypicals, and her life goal is to make life better for future generations of autistic people.

She lives in upstate New York with her boyfriend of 10 years, two dogs and a cat.

What's good about everyone not thinking you have a disability? What sucks? What is similar and alike in being able to
Meriah

is a deaf blogger, global nomad, tech-junkie, cat-lover, Trekkie, Celto-Teutonic-peasant-handed mom of 3 (one with Down syndrome and one gifted 2E).

She likes her coffee black and hot.


Meriah on EmailMeriah on FacebookMeriah on GoogleMeriah on InstagramMeriah on LinkedinMeriah on PinterestMeriah on TwitterMeriah on Youtube

1 Comment

  • I have CP too, but didn’t really relate to Kari’s experiences, which shows that even people with the same disability can experience things differently. My CP is quite mild, which has pros and cons in itself. Help is available at times, but I sometimes have to explain why I need it and it has previously caused issues in my work-life. The thing that bothers me the most about my disability being visible is that it tends to attract unwanted attention like stares, laughs, people tapping me on the head or verbal abuse. I also find that I sometimes get infantilised or people will speak to whoever I’m with instead. I did relate to Kari’s need to make others comfortable with my CP, and when I realised that it’s not my job to that, it was really freeing.

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