Do you have a disability if you don’t have an official diagnosis?
First of all, disabilities are almost always thought of in either medical or legal contexts. The CDC’s definition of a disability, which is medical, is two-prong:
1. Any condition of the body or mind (impairment)
2. That makes it more difficult for the person with the condition to do certain activities (activity limitation) and interact with the world around them (participation restrictions)
The US federal government’s definition of disability is more detailed. For federal regulation analysis (housing, social security, etc., which is legal), someone is disabled if they:
1. ha[ve] a physical or mental impairment that substantially limits one or more “major life activities,” or;
2. ha[ve] a record of such an impairment, or;
3. [are] regarded as having such an impairment.
Major life activities are further defined as:
caring for oneself, or performing manual tasks
seeing, hearing, or speaking
eating, breathing, or sleeping
walking, standing, lifting, or bending
learning, reading, concentrating, thinking, communicating, or working
Most importantly, this is not intended to be an exhaustive list.
Under the ADA definition of disability, most people with disabilities fall into category #1.
Category #2 of the ADA definition of disability is intended to protect people who have recovered from disabling conditions but are still being treated as if they are disabled (cancer patients in remission or former COVID patients, for example)
Category #3 of the ADA definition of disability is intended to protect people who are treated as if they are disabled by associating with people who are disabled. This category would include roommates of COVID or AIDS patients or someone without a disability who advocates for people with disabilities.
Nowhere in EITHER of these definitions does it say:
That a medical professional has to identify the condition;
That the “impairment” or “limitation” must have a diagnosis label, or;
That input or opinion from a third party is required, needed, or even acceptable if offered.
Why does this matter?
People with the exact same diagnosis and identical test results can differ on whether or not the condition is “disabling” to them as an individual. My daughter does not consider her hearing loss disabling. However, she’s been dealing with it for almost thirty years, and it hasn’t deteriorated in the last ten. Someone who had experienced normal hearing their entire lives, who woke up with her level of hearing loss one morning probably would consider it a disability, at least until they had learned how to use assistive technology and adapted.
The definition of a disability starts with the individual experiencing the condition.
That doesn’t mean that others never get involved. For example, you might need to convince a doctor that your condition is disabling to file disability paperwork or take a leave from a job. But whether or not the doctor agrees with it, you should not impact your individual identity as a disabled individual.
If you don’t have a diagnosis, you still have a disability.
Not having a diagnosis does not eliminate your condition from existence. Having a diagnosis is a label, nothing more. If you struggle with reading printed text, it might be helpful to have a dyslexia diagnosis, for example, to attempt mitigation measures that are known to be helpful with dyslexia. Not having that dyslexia label does not eliminate your reading disability. You are a person with a reading disability without a dyslexic, dyspraxic, IDD, ADHD, or any other diagnosis/label.
If you refuse treatment for your condition, you still have a disability.
In this awful and poorly thought-through “Dear Abby” letter, both Abby and the person writing Abby linked a wife’s refusal to seek treatment as evidence that she was “faking” her disability. Abby (Jeanne Phillips, the original “Dear Abby’s” daughter) even went so far as to suggest that the writer consider his future with his wife over the alleged faking.
Nothing could be further from the truth. People with disabilities can have extremely valid reasons for refusing treatment, including:
They may not want to go through the pain and recovery involved in the surgery.
They may not be able to afford the cost of treatment.
They may not want to experience the side effects of long-term pharmacological treatment.
To the disabled individual, the risk of treatment may outweigh the potential reward. No one else’s opinion (including Dear Abby’s or a spouse) matters. I have refused treatment in the past (cortisone shots for plantar fasciitis, for example) because I didn’t want to deal with chasing my high blood sugar for 6 weeks after the injection. Yes, I refused the recommended treatment, but that didn’t diminish the pain I felt from the untreated plantar fasciitis. But here is what I did experience because of that refusal:
I had a pharmacist publicly accuse me of “drug-seeking behavior” in the middle of a busy pharmacy when I needed to increase my opioid prescription because I decided that a cortisone shot was not the best solution for my foot condition.
I had to appeal the podiatrist's refusal of a referral for more conservative acupuncture treatment, which went all the way to the state insurance board. Four months later, I won my appeal, got the treatment, and my plantar fasciitis was cured four weeks later. The podiatrist was chastised in the ruling for not acceding to my very reasonable request.
The podiatrist subsequently fired me as a patient, and I had to find another doctor, which was hard because he was the head of the department at the facility that my insurer was forcing me to use. His staff was scared to death of the control he had over their careers, and they didn’t want to be seen helping someone whom their podiatry chief had dismissed from his practice.
None of these people saw me as a person with a disability.
They saw me as a person who was not seeking what THEY thought was the most appropriate treatment for MY condition
And then discriminated against me because of their half-baked beliefs.
People with disabilities should be able to refuse any treatment they want, any time they want, and no one should EVER question that decision.
But people DO fake disabilities …
Yes, some (hopefully a small number) of people have been caught faking a disability. Usually, money is involved. Occasionally the “reward” takes the form of passing off a pet as a service animal, which is one reason airlines are starting to crack down on emotional support animals. Sometimes there is an underlying mental health issue driving the person to lie about having a different disability. These are the people who convince others they have a hidden disability. Back issues seem to be popular for this type of fakery, as is cancer on GoFundMe. In the case of back problems, they claim every step is painful; sitting is painful, standing is painful, and they can’t work, followed by getting caught on videos doing squats with 150 lb. barbells in the gym or picking up their 50 lb grandchildren on their driveway.
These are the people who screw it up for the rest of us !!!
I’ve been accused of faking my disability to get preferential parking because I can assemble the wheelchair I carry around in my trunk (cost: $4000) in a car that I drive with hand controls (cost: $3000) because I can walk to the trunk and assemble it by myself. Just because you don’t understand someone’s disability does not mean they are faking it.
When I was younger, I would get angry when I would see a parking lot with no accessible parking, and then see later see someone who didn’t look disabled get into one of those cars. But then my friend Tom, who had cystic fibrosis, needed an accessible parking card. Followed by my friend Steve who had a brain tumor, and my chiropractor, who had colon cancer. None of them looked disabled on the outside, and it hurt me to hear the judgmental stories they told me (probably figuring I had been through the same) about being accosted in the parking lot and asked to prove their right to have accessible parking access. It was a strong, if unpleasant, lesson in invisible disability because I was the one being ableist.
If I, someone with multiple disabilities some of which I’ve had from birth, can’t tell who is disabled from who is faking a disability.
Guess what — neither can you.
So take the high road and assume they are disabled until they prove they are not.