I get into arguments with people on the Internet a lot these days. It’s kind of one of the only ways to be a disability activist when there are a lot of days where you can’t leave your bed.
The most recent argument I had was with a particular kind of ableist disabled person, which, oxymoronic as it sounds, is a thing that actually exists. In fact, I’ve encountered way too many of them. It’s common for us to internalize the ableism we encounter on a regular basis, creating divisions and hierarchies within our own communities in an endless uphill battle to be the “good” disabled people. The ones our ableist society accepts and supports, if only as tokens.
The person I argued with was the type who devalues disorders that rely mostly on patient reporting of symptoms for diagnosis. This person believes there’s some kind of rampant trend of “faking” disability.
This happened on a post I made challenging the gatekeeping model used by too many agencies offering support and resources for disabled people. I had only asked people to consider what it might be like if, instead of focusing on trying to keep people out if they feel they don’t really need the services, such agencies focused on making sure that no one who needs them falls through the cracks.
But this, somehow, is a controversial position, even within the disability community. I see too many people who hold their formal diagnoses over the heads of people who don’t have them in the same way that some people who have college degrees hold them over those who don’t.
There can be many barriers to obtaining a diagnosis, and they often connect to other forms of systemic marginalization. Yet there are still people in our own communities who treat undiagnosed or self-diagnosed people like outsiders, as if no matter how hard your disability makes your life, it isn’t real until you can prove it.
The thing is, “self-diagnosis,” for all the stigma that term carries, is rarely a case of a person hearing about a complex medical condition or reading about it on the internet and deciding they definitely have it and don’t need a doctor to confirm it. More often, it’s a case of a person doing diligent research into their symptoms, learning the clinical criteria of syndromes that match them, and figuring out that they meet them. It doesn’t usually mean claiming to actually have a condition so much as recognizing how much you have in common with those who do and seeking out support among them.
I have multiple disabilities, some of them diagnosed and some not. I belong to an online support group for a genetic condition I strongly suspect I have due to meeting the clinical criteria and having the same kinds of problems show up, to varying degrees, scattered throughout my family. I was added to this group by someone else and yet still have constant feelings of being an imposter.
Even as I tell stories about my body that are nearly identical to those told by people who have been officially diagnosed, I feel often like those stories are somehow not mine to tell –- even though they are things that happened to me –- because I don’t have the piece of paper the others have declaring that my disability is real.
In the autism community, a disability I actually have been officially diagnosed with since childhood, I see a lot of this, because in recent years understanding of autism has grown and spread and people who spent their whole lives just thinking they were “weird” began to wonder whether they might actually be on the autism spectrum. The community has quickly gotten a lot bigger. But because many of these people had made it to adulthood –- in some cases, well into it –- without anyone ever suspecting it, they often found it hard to be taken seriously.
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Even when people who think they might have a disability or chronic illness don’t encounter barriers to accessing medical care, the doctors themselves sometimes make getting a confirmed diagnosis difficult. Some doctors don’t seem to like it when people self-advocate and tell them that they have suspicions about the cause of their problems. People who do can get labeled drug-seeking or as hypochondriacs just for asking for a diagnostic screening.
Other doctors seem hesitant to give patients a diagnosis of a condition that has no known treatment, even if they fit diagnostic criteria.
The problem with this is that a formal diagnosis is usually needed in order to access any kind of support, especially when self-diagnosis has become a punch line. When a character on Glee announced she could say whatever she wanted because she had “self-diagnosed Asperger’s,” and when a reporter derisively stated that Rachel Dolezal’s mother had diagnosed herself with chronic fatigue syndrome to imply that a penchant for fabricated personal narratives ran in the family, the message sent to all of us was that if a person says they’re sick or disabled, but a doctor hasn’t, that person is making it up.
What if you have the exact same symptoms as a person with a confirmed diagnosis, but you can’t afford a doctor? Or there isn’t one in your area with the right specialty and you can’t travel? Or you do see one, but the doctor’s own personal beliefs or prejudices stand in the way of them giving your condition the attention it needs? Does any of that make your disability less real?
The fact is, as strange as it may sound to use this word, some chronically ill and disabled people are lucky. They’re the ones whose condition gets caught unexpectedly when they go to the doctor for an unrelated issue, or the ones who go in right away when they notice a weird symptom and a simple test gives them a diagnosis of something everyone’s heard of and knows how to accommodate. They’re the ones who have good insurance and competent, compassionate doctors in their area who know exactly how to help them. And too often, they’re the ones who turn on their own community and use their experience as the standard: if you didn’t get a diagnosis right away like I did, then your disability isn’t real like mine.
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I’ve seen the accusations of “doctor-hopping” via the stereotype of a person who keeps going to different doctors until someone gives them a diagnosis. This steretoypes implies that if a person goes to one doctor who is dismissive, or won’t listen, or isn’t looking in the right place and doesn’t come up with an answer, they should just give up and go home.
If one doctor can’t help you, but something is still clearly very wrong with your body, what are you supposed to do besides keep trying to find a doctor who can help? If months or years stretch on and you still haven’t found a doctor who can help (or barriers are preventing you from even looking for one), but you have found community among people who share your symptoms and can commiserate and offer advice, even if their symptoms have a name and yours don’t, are you trespassing there if you don’t have the stamp of medical approval?
And all this would be slightly less awful if not for the fact that the “lucky” ones, in many cases, aren’t lucky at all — they’re just privileged. Class privilege usually comes with the good insurance and the good doctors and the presumption that you’re telling the truth when you go to see them. Doctors for poor people, assuming they can even access them, are too often overworked and jaded, trained to ferret out those seeking drugs or disability letters for nefarious purposes, more focused on guarding the gates than finding answers and giving help. That help is a lot harder to get when your doctor is trying to figure out what your “angle” is instead of trying to solve what they immediately recognize as a crucial medical puzzle.
Refusing access to self-diagnosed people in disability spaces is saying that, whatever the reasons those people may have for lacking formal diagnosis, their own word on their experiences in their bodies doesn’t count. Refusing to help people find the resources to confirm a diagnosis because they’re “fishing” for it, if they come to suspect it on their own first, doesn’t help anyone; it only turns your diagnosis into an exclusive club for the people who never had to try to figure it out on their own.
True disability justice has to happen inside disability movements, too. We can’t gain ground for disabled people as a group if we’re pushing others in our own communities into the margins. Ultimately, we need to break down all the barriers that are preventing some of us from accessing the same care that others take for granted. But until then, the first step is to recognize that those barriers exist and that the people on both sides of them are equally valid.
[Featured Image: Black and white photo of an older man bent over and holding his lower back in pain. He is wearing a long denim shirt with rolled-up sleeves below his elbows. Behind him is furniture. Source: Pexels]