Dinner conversation tonight included finally getting the free America the Beautiful National Parks pass and how much I really don’t like calling T1D a disability and admitting life is sometimes better with accommodations.
Anyone willing to talk about how they overcame, or are still working on dealing with, not wanting to say they need a little extra something?
Many years ago there was an attempt to lessen the stigma around the term using the slogan “Disabled does not mean unable.” Even so it’s hard for it not to stick. A year or two ago found it very hard stand for more than a few minutes and I started using a shopping cart for support every time I go in the store, even if I’m only getting a couple of small items. I attribute it to being too sedentary rather than diabetes (I just finished physical therapy and am continuing to work on strengthening on my own).
The realization that your body simply doesn’t do all you want it to is a hard pill to swallow and the reason behind the disability isn’t obvious as it would be for someone restricted to a wheelchair or missing a limb. We may need flexible meal and break times in an workplace that strictly assigns them, or the ability to bring our own food to places where it is not ordinarily allowed. In my case mobility and not diabetes would be the reason for a park pass but being able to bring my own food in would be an added perk. Your reasons for needing a little extra something may be different but many or most people do need help with certain tasks even try do not fall under the category of “disability” or they do not consider it one themselves.
I hesitate to admit that I have never felt the stigma of diabetes, nor ever declared it as a disability. It was just part of my life.
Starting out - I’ve had T1 for almost 50 years - I was reminded by various sources that you should let others know of your T1, in case of emergencies. My more recent thoughts about diabetes in relation to work are that everyone has always been accommodating. If I stated I needed to step away or time off, I was never unable to. I have never noticed or felt anyone thinking less of me, although some might have.
That last statement was almost true, except for one instance. About 20 years ago, when I was still single and using dating apps, I had arranged to meet a doctor, and during our conversation, she had something about people with T1 diabetes being “defective”. I took that in - I had not mentioned that I had T1 - and decided to win her over during the date. At the end, she asked me if I would like to see her again, to which I explained why I wouldn’t. I imagine people like her exist, but I have almost never encountered them, at least as far as I know.
As far as genetics and T1 is concerned, although it might imply a defect, in many ways it was a beneficial feature of human evolution and cultural development (see below).
Recent 2026 research led by David Reich reveals that natural selection has favored immune-boosting alleles over the last 10,000 years to combat infectious diseases, while simultaneously reducing the frequency of variants linked to Type 2 diabetes risk and high body fat. This evolutionary tradeoff upregulated the immune system, increasing the prevalence of genes like TYK2 and HLA that protect against pathogens but elevate the risk for autoimmune and inflammatory conditions.
The massive study, which analyzed nearly 16,000 ancient genomes from West Eurasia, found that the shift to farming and denser populations likely accelerated the selection of immune-response alleles. This directional selection favored traits that helped ancient humans survive respiratory and intestinal infections, though these same genes are now linked to modern inflammatory and autoimmune pathologies.
“Stigma” is something perceived and when speaking of diabetes stigma, is that in the head of the casual observer or something that the person with diabetes places on itself - by thinking that others might consider me disabled. Disability, or having a disability does not mean handicapped. Think, does having been diagnosed with Autoimmune Diabetes entitle access to an HP Parking decal? No, unless that person is also “Mobility Handicapped”.
True, P.L. 101-336 says that I am permanently disabled BUT does not say that I’m a stigmatized individual, that I can’t be proud of my many achievements, or that I’m a lesser human.
@spdif , I consider myself a “work in progress”. The idea that T1D is a disability is both accurate and infuriating to me. On the logical side, T1D fits the description, but the emotional aspect requires a lot of unpacking for me. My Dad was disabled. He has polio as a teenager. He was paralyzed from the waist down. As soon as I was diagnosed, at 13, when I didn’t even acknowledge my own mortality, the doctor said to me “You can do anything anyone else can do, except join the Army”. My Dad clearly couldn’t walk. My Dad did everything, he mowed grass, he drove cars, he studied and became a doctor, he taught and mentored, he assisted, he healed others, he climbed ladders and cleaned out the gutters on the family home… everything. I would caution anyone who was going to tell him he couldn’t do something.
So there’s the logic part and there’s the I can do anything part and these concepts do not play well together in my head. Oh it stopped actually bothering me in my 30’s but before then it was like a thunderstorm in my mind.
I work for an organization that has high ethical standards and accountability, and what I would describe as psychological safety. I make my own schedules and have full autonomy on when and where I am working. I don’t need to ask anyone for accommodations I just need to plan them myself. So I never really needed to ask for anything from them.
Would I declare I am disabled to get a free park pass: Yes. yes I would if I wanted one. Would I declare myself disabled and voluntarily give up any of my licenses? no I would not. If there’s a question such as : Check this box if you feel you cannot do [fill in the blank]. I would not check the box.
Is this helpful? I don’t know. I don’t feel conflict anymore. I guess I can be disabled when it benefits me.
While my work was very different from @joe 's I too had flexibility to take breaks and lunch as needed rather than being locked into a defined schedule, so I never needed to request accommodations. Ironically at this point it’s not diabetes has stopped me from doing things but the mobility issue I mentioned earlier.
To your point @spdif , maybe it would help to make a distinction between the label of disability and having something be disabling to you personally. Wearing glasses might loosely be considered an informal accommodation that meets a need, but having that need does not have to mean the condition is disabling to the person who has it. Likewise accessibility to accommodation might be a helpful option, or a necessity. Which one depends on the individual.
I think another way of framing diabetes, is not seeing it as so much of a limitation, but as a constraint that can make your life better*, even becoming a role model for others, Admittedly, I am someone with more of a gungho attitude, a “How can we make this better?” slant. I would aim to think of the positives, not wallow in the negatives, but be realistic and goal-oriented about what one wants, to rise above the circumstances. With the tech we have, and that is being developed, one can look forward to a positive, fulfilling life, as one strives for fitness, good food, self-care, purpose, community, and loving relationships.
(*) - An authour I’ve read, David Epstein, an author who wrote The Sports Gene, Range, and now, Inside the Box: How Constraints Make Us Better. His YouTube Channel is https://www.youtube.com/@DavidEpsteinAuthor.
Thanks y’all. I’ve been drafting a reply for a while and the process of rewriting helped me figure out my resistance to the disability label. A lot of it is framing because the word disability is so broad. I found leaving the “can’t” out helps a lot and settled on I’m disabled because I need external insulin to live. We all take insulin, no big deal, right?
This is where I’m coming from. 99% of the time I’m fine but that means I’m not used to checking the disability box and it took a minute to talk myself into it.
Same. In this case I needed to be a little less gungho and stop and think about how I was getting where I was going so next time I can just be gungho in a slightly better for me way.