I don't like to think of myself as being "disabled" just because I happen to be living with type 1 diabetes.
But legally I am, per definitions within the American Disabilities Act (ADA). So, I force myself to accept that label for purposes of protection in the workplace, public spaces or other societal situations that might arise. This is important not only for myself, but for the Diabetes Community at large to combat potential discrimination.
The issue of the "disabled" label has been an ongoing topic in the D-Community, and recently came up again at the MasterLab diabetes advocacy training event in early July, where a presentation by John Griffin and George Huntley, both type 1s who work with the National Diabetes Volunteer Leadership Council, delved into the finer points of workplace discrimination issues.
They gave a pretty comprehensive rundown of the American Disabilities Act (ADA) protections that cover us PWDs (people with diabetes), and the many resources that exist -- including from the ADA itself -- for people to talk with advocates who can help navigate these tricky discrimination issues.
Very clearly, people with diabetes do have a disability by law and are entitled to many types of legal protections.
The pair also made a solid point of declaring that "we aren't pre-existing conditions, we're people and we should be defined as such with all opportunities open to us."
Interestingly, I wasn't aware that with the passage of the ADA in 1990, people with diabetes were protected from workplace discrimination, but if they were discriminated against in the workplace due to diabetes, they couldn't fight that in court based on how well they might take care of themselves. It was a Catch 22, and that changed with a legislative amendment package in 2008.
While the whole discussion about our self-identity of "disabled" versus "not disabled" didn't take up much official programming time, but it sparked a hot side debate among several of us in attendance. It goes back to the core issue of not wanting to be seen (or view ourselves) as somehow "broken," yet at the same time having a real, legitimate need for some special protections and support with our difficult illness.
All that got my mind working on this again, and I started looking around and found some very interesting online discussions and info, including a recent article from the College Diabetes Network on Why You Should Apply for "Disability" Accommodations in College as a T1D. The author was really hesitant to label herself that way, or appear to be "abusing the system," but in the end, she writes: "I couldn’t have been happier that my mom convinced me to do it. Besides having the opportunity to have more privacy and a more sterile environment for things like site changes, more room for heaps of medical supplies and a mini-fridge, my disease was validated. We are deserving."
Defined by Diabetes?
I find it interesting that so often, we say within our community that we aren't defined by diabetes and are encouraged to embrace our "inner person," not just the aspect that happens to be living with this condition. We talk about that when addressing mental health too, and when it comes to advocacy -- that we're more than a patient or D-advocate, and the rest of us matters just as much.
Then, we get into the nuances of the term "disabilities" and how that invokes images of handicapped parking spots and physical impairments that don't always come to mind with D-Life. Naturally there's a resistance to thinking of ourselves as belonging to this universe, because it can sometimes feel as though we're admitting defeat.
So, we turn away from using this word to describe ourselves in an effort to avoid limitations.
All of this plays into the debates we often see in our community:
Should we say 'diabetics' or people with diabetes (PWDs)?
Is it OK to "play the D Card" to get special accommodations at Disney parks or in other public places?
To what degree are we defined by our disease?
Just the other day, I shared a story about getting a nasty bug bite followed by a common cold and ending up in the ER -- neither of which had to do specifically with diabetes, but had nevertheless had ripple effects on my blood sugar management. In that post we used the popular term of endearment "Real People Sick," and that stirred up controversy about how that might be offensive, insinuating that we PWDs are "not real people." It's like the flip side of complaining that the term "diabetic" is offensive because it defines people by their disease.
It's all intriguing, and shows the power of words.
Who Speaks for Us?
Back at MasterLab, while the brilliant D-peep Heather Gabel and I were live-tweeting some of the discussion around the term "disabled," she made a very valid point:
Right. Just because some of us are more active advocates than others (and get to attend conferences and company meetings) doesn't mean we have the final say on terminology... or any other controversial topics for that matter.
Another hot example is the energy that many of us advocates have been channeling toward an FDA panel meeting on July 21 to determine whether Dexcom's G5 is good enough to use for treatment decisions like insulin dosing. While many of us believe this is the right move, there are also many in our community who do not. In this case, the positive voices for this change were more clearly outspoken. Obviously, PWDs are not all the same, and there will be differing opinions in our D-Community.
On the question of the "disabled" label, it's a legal definition, so you can't really argue with that.
But I personally don't like hearing it, because it's the kind of term that makes me start feeling sorry for myself and self-pity is the last thing I need! That flies in the face of our positive mantras, "You Can Do This" and "Diabetes Won't Stop Me."
At the same time, people with diabetes are suffering from discrimination and we have to be grateful for the protections in place.
In the MasterLab presentation, John and George showcased a number of examples, including a former paramedic from the south side of Indianapolis (near where I used to live), who lost her job due to her type 1. She ended up winning a federal jury award as a result of that wrongful termination case. They also mentioned that people are often exposed to mandatory health exams at work, and they're being discriminated against when those medical exams show higher A1Cs.
These are all very real situations, and as a community we have to be able and willing to do our part to address these issues.
Which means in part that I need to suck up my distaste for the word "disabled" and own it, in order to support the legal protections for those who need them most.
So Diabetes Community Peeps -- we'd love to hear what you think about all of this?