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The Great Disability Debate
Imagine you are at a cocktail party for people with type 1 diabetes (T1D). Young, old; newly diagnosed, veteran T1D-ers; faithful pumpers, staunch multiple daily injection (MDI) users—all walks of life are represented.
The party is a little dull, so you decide to liven things up.
“Is T1D a disability?” you ask the room.
A woman immediately responds. “Of course it’s not,” she says. “I have a full-time job, a mortgage, a wife, and two kids. I ran a 5K last Sunday, and I’m traveling for work this week. How could I do all of those things if I had a disability?”
There are a few nods around the room, but also some eyerolls and murmurs. A teenager looks agitated as he weighs in.
“Sure,” he says, “I do all the things I want to do too. But it’s a lot more work for me than it is for my friends who don’t have T1D. They don’t have to check their blood sugar before they drive or bring a bunch of emergency snacks to hockey practice. They can go to parties and stay the night without thinking about it. I do a lot of things other people don’t have to do just to manage each day. I definitely don’t always have the same level of ability as they do.”
An older man responds sympathetically. “It’s true that certain things are harder,” he explains. “But can you really compare your experience to those of a person who is blind or deaf, for example? What about someone who uses a wheelchair?”
“If I don’t take insulin, I will die,” someone retorts. “How is that not a disability?”
“But if you do take insulin, you can live normally,” another responds.
The debate picks up. People begin speaking over one another until the entire room is abuzz:
“—I can’t even afford my insulin. Other people don’t have to pay this kind of money just to live.”
“—and yesterday, I was late for work because a low blood sugar kept me from driving.”
“—my younger brother has Down syndrome. How can I possibly compare my experience to his?”
“—sure, things are okay right now, but what happens if I have complications later? What if I can’t work by the time I’m 50?”
“—don’t need people to feel sorry for me.”
“—I’m just exhausted and so tired of having to explain myself.”
“I don’t think it’s the nature or even the severity of the condition that matters,” one person explains calmly. “It’s about the need for accommodations. Sometimes, I need extra accommodations that people without T1D don’t need. That’s what makes it a disability.”
The debate goes on for hours and shows no sign of stopping.
Protection Under the Law
There is no right answer to the question of whether or not T1D is a disability, which is what makes it such a rich topic of debate.
Many people with T1D, myself included, struggle to identify with the “disabled” label. This reluctance likely has a lot to do not with T1D itself, but about what it means to have a disability in our society. The stigma around disability is very powerful—though that is a topic for another day.
Accessing disability services can also feel like an unfair advantage for people who, like me, feel they can succeed without these services. As an able-bodied person who is able to work, move freely, and support herself, I don’t usually feel I “deserve” extra help.
Still, T1D comes with a dependence on life-sustaining therapy, and this therapy has severe side effects that can be disruptive at best and life-threatening at worst. It can temporarily impair an individual’s ability to perform in work or school, and it causes a great deal of daily stress.
It’s true that on average, people with T1D are living longer, healthier lives than ever before. However, T1D can still affect livelihood, mobility, and quality of life. Diabetic retinopathy remains the leading cause of blindness in American adults, diabetes and high blood pressure are the leading causes of kidney failure, and T1D increases the risk of lower extremity amputation by 40 times, for just a few examples.
For these reasons, diabetes is recognized as a disability by the Americans with Disabilities Act, which covers employment, public services, public accommodations, and telecommunications. (It’s even used as an example on this fact sheet about disability discrimination by the U.S. Equal Employment Opportunity Commission.) This designation is not intended as a stigmatizing label, but as a protective one.
Resources for People with T1D
There is a lot of administrative work involved in starting college or university. If you live with T1D, add one more item to the list: Registering with Student Disability Services.
By providing the details of your condition to your school, you are letting them know that from time to time, you might need reasonable accommodations in order to succeed. You might also qualify for additional scholarships or bursaries to help offset the cost of living with T1D. (Check out this post from Beyond Type 1 for more details.)
I wish that I had done this when I was in school. Instead, I suffered needlessly. I often experienced severe low blood sugars before or during my exams. Rather than having extra time to recover, I would treat my low, then stare at the exam paper and wait for my brain to start functioning again. When I started to feel better, I would write feverishly, trying to finish the test before time ran out.
In an effort to avoid this experience, I sometimes went the other way: I overate before my test to ensure I wouldn’t go low, only to have to contend with the brain fog, fatigue, and discomfort of an extreme high instead. All of this, of course, was completely avoidable and unnecessary.
Since 2008, diabetes has been qualified as a disability under the American With Disabilities Act, which requires employers to treat employees with disabilities fairly. Just like they do at school, people with T1D have a right to reasonable accommodations in the workplace. As the American Diabetes Association explains, reasonable accommodations might include taking breaks to treat lows, the ability to keep supplies or food nearby, and permission to sit if needed, to name just a few.
Protection under the law also means that disclosure is optional: It is completely up to you to choose whether you tell your workplace or coworkers about your T1D.
The thought of asking for accommodations at work can be daunting. Depending on your circumstances, you might reasonably fear discrimination or even just unwanted attention related to your T1D. These are completely valid concerns. Still, it’s also true your workplace can’t accommodate your needs if it doesn’t know what they are.
When Filing Your Taxes
If you live in the United States and have T1D, and if living with T1D has prevented you from working for at least one year, you might be eligible for Social Security Disability or Supplemental Social Security Income through the Social Security Administration.
If you live in Canada, like me, you may qualify for the Disability Tax Credit (DTC). This credit is available for individuals with T1D because they spend at least 14 hours per week, on average, administering life-sustaining therapy.
When I recently learned about my eligibility for the DTC, I questioned whether I truly “deserved” this tax break. Much like I had when I was a university student, I felt the “disability” label was inconsistent with my ability to work, move, and live independently.
This time, though, I considered the cost of living with T1D, which is real and significant. I also thought about the countless extra steps I take each day to complete simple tasks. Most importantly, I thought about my future and the accommodations I might someday need to continue living the way I want to. After speaking to my endocrinologist, I decided to apply.
Putting the Semantics Aside
Language, including the language we use about ourselves, is powerful. As the authors of this 2017 paper in The Diabetes Educator write, it “lies at the core of attitude change, social perception, personal identity, intergroup bias, and stereotyping.” Negative attitudes of disabilities can also lead to disempowerment, social exclusion, and isolation, as Babik and Gardner (2021) explain. With this in mind, it is no surprise that people with T1D have strong feelings about the term “disability.”
Still, there is something to be said about looking past this label. In the end, the suitability of the term “disability” is not what matters: What’s really important is knowing your rights as a person with T1D, and also feeling comfortable accessing the many resources intended to improve your quality of life.
Rather than stressing over the semantics, consider setting the disability debate aside—or just reserving it for your next dull cocktail party—to prioritize your needs instead.
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