“Am I disabled?” For millions, there’s not always a clear answer

At some point in my childhood, my hands began to shake.

Not badly at first—I couldn’t draw a straight line, but I didn’t mind much since I’d never had any inclination towards art. As I entered my teenage years, though, the tremors got worse and started spreading out of my hands.

Although I tried to control the spasms in my face with ever-increasing doses of beta-blockers and anti-epileptics, by middle school I’d acquired the nickname “Twitchy.” In high school, my handwriting had gotten so atrocious it’d become a running joke among the teachers. And by the time I reached college, I finally admitted to myself that my neurological condition made a few things in life definitively harder.

Yet the first time a classmate recommended, after watching me take notes by hand, that I ask for an accommodation to help with written exams, I balked.

I told him I felt like anything they could offer would be unfair because I could use extra time to think over questions longer than other students. Besides, I type faster than average. My tremors, which this friend pointed out are explicitly covered under the Americans with Disabilities Act (or ADA), are kinetic. That means that most of the time, they’re mild, especially when I’m at rest, though they spike drastically under certain conditions. But I knew in the back of my head that the real reason I didn’t want an accommodation was because it’d mean officially claiming a disability.

It wasn’t that I was ashamed of the classification. Instead, I felt like calling my tremors a “disability” would cheapen the word.

I’d grown up around adults with tremors who made no bones about them, and around people with far more obvious disabilities—like my hemiplegic mother. To me, a disability was something that interfered with pretty much every aspect of your life.

I felt like calling my tremors a ‘disability’ would cheapen the word.

I’m not alone in this. In forums and blogs, and among my friends with brain damage, serious mental illness, or other less-apparent issues, plenty of people want to know whether it’s accurate, acceptable, or functionally vital to call themselves disabled. But there just aren’t that many guidelines out there.

Yet after sustaining a serious of minor injuries with lasting effects on my chest and shoulder in recent years, making it incrementally harder to do select tasks, I've found my self questioning my status more and more.

So after scalding myself with hot tea and feeling something go pop in my ribcage while working out for the umpteenth, I decided it was time to try to resolve this debate within myself once and for all by reaching out to as many experts on disability identity and politics as I could.

"The first thing to know is that there's a difference between disability and impairment," says Professor Lex Frieden, a wheelchair-bound spinal cord injury victim and architect of the ADA.

“Impairment relates specifically to the kind of condition that somebody might have,” explains Frieden. “It’s kind of a general description” of whatever affects you physically or mentally.

Disability, on the other hand, is harder to define. There are legal definitions, the best known of which is the ADA’s, which counts any physical or mental impairment that limits at least one major life activity as a disability. But other regulations differ—under the Social Security Disability Insurance program, you need to be limited to the point of being unable to work. Different states have different barriers and metrics when it comes to measuring disability for parking permits or accommodations. And what counts as a “reasonable accommodation” by an employer is surprisingly hazy, which makes it a challenge to effectively argue an ADA discrimination case.

Frieden says that disabilities really come down to context and interpretation. “If you have a vision problem, for example, that doesn’t prevent you from driving, then you don’t have a disability when you’re driving,” he says. “But if that vision problem prevents you from being a professional target shooter, then you do have a disability” if that’s your dream vocation.

This conditional view of disability is a fine way of thinking about it as a legal or physical state. It helps us to determine who is eligible for which benefits. But a conditional view of disability doesn’t do much for someone who’s just trying to figure out whether it’s okay to think of him or herself as disabled.

For example, says Carrie Sandahl, the head of the University of Illinois at Chicago’s Program on Disability Art, Culture, and Humanities, if someone has a disfigured hand that doesn’t actually limit his or her functional abilities, someone else can still see the difference and treat that person differently. The ADA has a provision protecting people who experience disability discrimination when they might not actually have a disability, so that individual might be entitled to some form of "disability" benefit or consideration. But even if the individual claims that benefit, he or she might still not think it's okay to identify as disabled if he or she is only perceived as such, but not physically prevented from doing anything.

The fuzziness of who’s roped into disability as a concept or identity, versus who’s entitled to a benefit, can cause serious issues—especially when people with disabilities police each other over discrepancies between one’s apparent identity and claimed community or benefits.

“You witness people with some impairments who are able to have more access to things than people with other kinds of impairments,” says Sandahl of her own experience. “You can call it a disability hierarchy… We’re able to come up with a bunch of ways to differentiate amongst us.”

Cheryl Green, an artist working with brain injury victims whose own brain injury is not readily apparent to many, describes a double whammy experience of what’s seen by some as a “lesser” disability: Non-disabled people discredit or disbelieve the impairment’s impact, going so far as to deny accommodations, as do more obviously disabled people, who decide not to welcome someone like Green into the impaired community.

“[This] might help people get things that they need and keep other people from getting things that they don’t really need,” says Green, who argues that even though she’s able to pass as fully abled in certain contexts, that shouldn’t affect her commitment to or identification with disabled communities. “It also makes everybody into a vigilante instead of focusing [on] what the actual problem is—the idea that we don’t need to make the world as accessible as possible.”

To someone like me who’s dead terrified of overstepping and getting rebuked for claiming something beyond my need or (in)ability, this isn’t a reassuring status quo.

Many of those who'd be considered by most to be disabled, at least from the outside, choose to shirk the label—even if they might be able to benefit from it.

That’s not always because internally they decided their impairments didn’t affect them enough to warrant the identity; often it has to do with judgments from the outside world.

That said, Frieden believes that if Franklin Roosevelt were politicking today, he might not feel the need to hide his disability for fear of losing standing with world leaders or the electorate. “I think we’ve probably made a lot of progress in our culture by having people who don’t have disabilities willing to claim they do in order to get some modest benefit”—as with those feigning some type of impairment to get better a parking spot.

But both Frieden and Green think we’ve got a long way to go before we reach full acceptance, especially for people whose disabilities are invisible. As Green puts it: “Wheelchair is cool. Blind is cool. Deaf is cool because you get those cool interpreters at concerts who are fun to watch. The little things that people can latch onto that they kind of like. But cognitive and intellectual disabilities—that is a group that is really, really kind of hated by society.”

Self-righteous able-bodied people have taken to policing what they see as fraudulent claims to disabled status. These folks, points out Frieden, are often making a slew of wrong assumptions about those with truly debilitating heart conditions or respiratory problems. Occasionally, adds Sandahl, individuals with less outwardly conspicuous disabilities might feel as if they need to use a symbol of their impairment, like a cane. But if that a cane-user’s balance issues are only intermittent, as soon as someone catches that individual walking cane-free, they’re sure to face an undue amount of scorn.

“That’s the reason why I think a lot of people with non-apparent disabilities have a hard time coming out,” she says, “because it’s difficult to signal to people, and then people are suspicious.”

Admitting we need support can feel like an admission of deep personal failure.

It’s all summed up, says Sandahl, in that regrettable pejorative idiom, “Use it as a crutch,” which has turned a vital mobility tool into something unnecessary to be transcended.  

“The medical model tells us that we should all be striving for normalcy,” says Sandhal. “That if we’re not [normal], we need to be corrected. We need to be rehabbed. We need special education. We need radiation. We should put our energy into approximating normal. Not only is it something we should strive for, but it’s our personal responsibility. So if we don’t try to ameliorate our conditions, then it’s [our] fault that [we] are impaired—that [we] haven’t tried hard enough… It’s just a perverse cultural construct.”

For Sandahl, who has mobility issues, this internal stigma forced her, against her best knowledge and logic, to avoid using a walking aid for a long time—until she blew out a hip. Then she opted to use a cane, only to develop scoliosis from relying too much on it. This led her to crutches, but she could only support her weight on her arms for so long, limiting her mobility. So eventually she decided to start using a wheelchair, which she admits made her feel like a lesser human.

“People will hurt themselves by not using an aid before they need it,” says Sandahl. I know from the pain in my joints and chest and twinge in my hands that I’ve done just that for years. And the twisted part is that, even as I write this, I worry that becoming disabled in my own mind will still feel wrong. As if I’d be an interloper, a fraud, rather than someone with a real need.

I've come to believe that if you know in your aching bones that you need an accommodation or a community to identify with, then you ought to claim your disability.

The problem becomes knowing the difference between what we need and what we want. I’m not entirely sure that I need people to help me carry a hot beverage every now and then, or if I just want one damn thing to go a little easier next time. (It sure would be nice to avoid tremor-splashing coffee on my next first date, though.)

I worry about making the wrong call. If I claim more for myself than I should, I’ll be one more person contributing to a diminished perception of others with more severe impairments. If I claim less than I should, my complacency might lead to more vigilantism against people with less evident but still impactful conditions. I also still worry about the way others will judge me for either identifying as disabled, or claiming an unnecessary benefit—or both. This continuing murkiness will probably drive me to claim a disability benefit on occasion and only situationally refer to myself as “minorly” disabled.

But that's just my personal calculation. If, like me, you’ve found yourself asking whether something's bad enough to merit help, or just to call yourself disabled, I hope you’ll give yourself permission to answer that question honestly.

This article originally appeared on GOOD.