Disability and Diabetes Revisited

The other day as I was filling out some forms –- checking off my gender and race -– I ran into that perennial question: Do you have any disabilities? My gut reaction is always an emphatic NO, but then I remember that delicate dilemma in our diabetic community about freedom from stigma and protection under the law. Disabilities_pix

I am reminded that advocates are working hard to pass legislation to update and refresh the Americans with Disabilities Act, which has -– according to sources at the Consortium for Citizens with Disabilities (CCD) — been “warped” from its original intent. The new bill is an effort to put the ADA (this time: Americans with Disabilities Act) in line with other civil rights statutes that focus on discrimination rather than on whether the person involved is disabled enough to earn protection.

A couple of examples to illustrate:

• The so-called “Sutton Trilogy” – a set of cases that set a “wellness” precedent for people with chronic illness: if you have a “mitigating measure” like prosthetic or an insulin pump that allows you to control your illness, then you’re not considered disabled enough to qualify for protection under the ADA (which kind of provides a perverse incentive to not take care of yourself, ay?)

Trouble is, an employer could say he’s not hiring you because your diabetes (or other condition) makes his insurance premiums go up -– but then the court says you’re not disabled enough for protection under the law. D’oh!

• Williams vs. Toyota – a case that set the threshold even higher to qualify for protection under the ADA. The courts are encouraged to look at so-called “major life activities,” i.e. are you substantially limited in something vital that “normal people” do? A CCD spokeswoman talks about Kerry McClure, an electrician who had interviewed in-person for a job at GM. He was hired, so he sold his house and moved his family to another state. But when GM found out he had multiple sclerosis, they dropped him like a hot potato –- despite the fact that he’d passed all the exams and could perform top-quality work. Still, he had no protection under the law, because the court said if he can brush his teeth, dress himself, and take the trash out, then he can perform “major life activities.” Aargh.

“That’s just how warped the interpretation of this law has gotten –- people are too disabled for the job and not disabled enough for protection,” the CCD spokeswoman laments.

When you put it on those terms, I damn well want “disabled” protection, too. If someone tries to edge me out of a job or other opportunity because of my diabetes, I want the law to stand up and say that discrimination is NOT OK. Therefore I’m very grateful that advocacy groups (including our ADA) are pushing for this revamp of the Disabilities Act, which will flip the issue to put the focus the discrimination, rather than just how disabled the defendant may be. The ADA Restoration Act has good support in the Senate, and will hopefully gain a stronghold in the House within the next month or two, the CCD tells me.

Meanwhile, the The U.S. Equal Employment Opportunity Commission (EEOC) which enforces the employment provisions of the ADA, has made a list of “reasonable accommodations” for PWDs in the workplace. Employers must provide:

• a private area to test blood sugar levels or to take insulin
• a place to rest until blood sugar levels become normal
• breaks to eat or drink, take medication, or test blood sugar levels
• leave for treatment, recuperation, or training on managing diabetes
• modified work schedule or shift change

Them’s your rights, People. Nice to know somebody’s looking out for us –- even if we mostly don’t feel disabled.

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12 Responses

  1. CALpumper
    CALpumper April 15, 2008 at 7:28 am | | Reply

    Hi there Amy:

    Soon enough I will be in DC. Check it out:

    We will be focusing on 3 major issues at Call to Congress:

    * Increasing diabetes funding for the Centers for Disease Control and Prevention and the National Institutes of Health;
    * Passing the ADA Restoration Act to eliminate a legal Catch-22 that allows employment discrimination against people with diabetes; and
    * Continuing the Special Diabetes Programs, which make up approximately 20% of the federal investment in diabetes.

    See link for specific schedule. I will be posting all of this on my Blog before I leave for DC (April 30th).

    http://advocacy.diabetes.org/site/DocServer/2008_Call_to_Congress_Schedule.pdf?docID=7581

  2. Kevin D.
    Kevin D. April 15, 2008 at 7:58 am | | Reply

    I like the idea but I also have issues with some of those changes. I both work full time for a company and also run a small video business on the side. In my video business I have a few employees and we tape events like weddings. What am I to tell someone if they are diabetic and need to stop taping in the middle of a wedding to test their blood sugar and then take a 20 minute break to “recuperate” their BGs.

    I think the same could apply to say a call center. If you need an unscheduled break now you are placing hardship on your other employees and the business for having less productivity that day. Take another example of a police officer. Should they make a special shift called the “Diabetic Shift?” TO me that’s unreasonable. And should they give you a break to test your BG and take you off of handling details? What happens when a bank robbery occurs in the officer’s beat? A unit from a further beat would have to respond possibly placing harm on the bank employees.

    I hope people get where I am coming from. I belong to another forum for diabetes and I see too many times people scream ADA to get accommodations at work. Remember, each time you do you are hurting your employer by not working which is what they hired you to do.

  3. tmana
    tmana April 15, 2008 at 8:51 am | | Reply

    Have to respond to Kevin’s comments here:

    Most call centers understand that there will be emergencies, and that employees sometimes cannot wait until break to get to the bathroom. The more urgent issue is, if your call center supports First Contact Resolution, you can’t transfer the call even if you are running low (I’ve been there). There are often procedures for dealing with this — offering a callback in a few minutes, for example. Usually, small non-crunchy snacks and sippable drinks are allowed at one’s desk for this sort of reason, whether or not the representative has diabetes.

    “Should they make a special shift called the “Diabetic Shift?”" TO me that’s unreasonable.

    The issue here is not “the Diabetic Shift”, but rather that in call centers, police departments, etc. one is expected to work shifts that change hours on duty — either from day to day, or every few weeks, or seasonally. The “reasonable accommodation” here would be to not change the time slot, so as not to mess up the individual’s meal/medication schedule. It is not a diabetes-specific accommodation; it is an accommodation to persons with medical issues surrounding diet and/or medications.
    I’ve known companies who would rather force an employee to quit than keep his shift stable, and I’ve known companies who will go out of their way to make sure a valued employee gets a shift that is appropriate for his medical needs.

  4. Kevin D.
    Kevin D. April 15, 2008 at 9:36 am | | Reply

    To tmana,

    I understand the food at the work station and I’m fine with that. But what it sounds like the ADA advocates want is the person to be allowed a 15 minute break somewhere else to do that snack. I work at a Police Department as a Dispatcher. I keep food right at my desk all the time. I’ve been employed there almost 3 years and have ALWAYS been given the option of having an officer come in off the road to cover me for a meal break. In 3 years, I have NEVER used that option as I’ve never seen a need. And I’ve sat at the desk in the middle of a shooting and been running 60 mg/dl. I grab some OJ, chug it, and continue on.

    As for your comment on shifts. I have two parts to that. My main point will be did the employee know there would be changing shifts when hired. If they did, then tough on them. I don’t care if it’s done by shift bidding or assigned, etc. If they knew when they started there their hours could change even 5 years down the road, they have nothing to argue on.

    Now, if it was standard protocol for that business to work everyone under 5 years experience on night shift and they change it with an employee only having 60 days experience to say everyone less than 5 years works evening shift, then OK, there may be an issue there where a special exemption should be granted.

    It should all come down to employee and employer working together. At my department most are against the employer, however, on a few occasions I side with the employee. And in doing so, I can pretty much get what I need because I’m not beating down walls to get it. I do understand there are some bad companies out there, for those employees just need to make enough noise to get the problem manager out of their spot.

  5. barbara-ann
    barbara-ann April 15, 2008 at 4:52 pm | | Reply

    Grrrrr – this one always makes my head spin because the whole thing is just so unbelievably complex.

    As a college freshman, I was mortified when offered a “handicap parking pass” because of my Type I Diabetes.

    The reason, I was told, was to “prevent potential hypoglycemic reactions that could result from walking very long distances between buildings”.

    As many of us would, I felt embarrassed, insulted and would not even consider it.

    100 insulin reactions later, I hoofed it to class through long treks in thunderstorms with sugars below 50, all the while shoving sugar cubes into my face like an addict. I was so full of pride. Somewhere in the back of my mind, I wished an angel would drop off that parking pass to me.

    But in retrospect, I’d still never have accepted it…

  6. Laura G.
    Laura G. April 16, 2008 at 7:37 am | | Reply

    Complex indeed. My work is as an orchestra violinist, classical performer and teacher. It offers me none of those accommodations. While Kevin D (commenting above) is not taking breaks while taping a wedding, I might be in the string quartet not taking breaks while playing the processional :) If a concert is scheduled during dinner, then no dinner, and so on. No, I can’t test during a rehearsal; we aren’t permitted to stop playing our instruments! Luckily, all human employees need bathroom breaks, so that’s when I test, bolus, eat, change pump sites, etc.

    If I insisted that my diabetes required all the accommodations that you listed, it would be understood that I simply couldn’t be hired for the orchestra, the string quartet or the teaching position.

    In order for all of us to keep our chosen work, I think we need access to adequate supplies and training so we can learn to manage our diabetes with flexibility and discretion. I can only work as a violinist (or an actor, or a police officer, a surgeon, or a trial lawyer, a professor, a chef…) with a lot of testing supplies, a pump or a very skilled use of MDI, a fine-tuned food strategy, and a discreet roll of glucose tabs in my pocket. I couldn’t do this work on 2 shots a day and 100 test strips a month and no diabetes education; I’d need a desk job for sure.

    So on the one hand, I want unions to work toward healthy working conditions for all of us and allow all human employees to eat, drink, pee, stretch, go outside, and leave work when they have the flu, a back spasm, bronchitis, a kid in the hospital, or severe hypoglycemia.

    On the other hand, we should be fighting for coverage for complete diabetes care that puts us back on that level playing field, rather than being unreliable and semi-ill and needing a list of special work accommodations due to substandard diabetes care…and then, of course, running the risk of losing our jobs and our health insurance!

    OK, off my soapbox.

    Thanks for bringing this up, Amy.

  7. Hans
    Hans April 16, 2008 at 12:22 pm | | Reply

    the world adjusted to PWDs?

    hi Amy,

    I’m shocked at this list of „reasonable accommodations.“ I know a lada diagnosed in 2005, hence flashbang05, who was and still is an active member of our German special police force. He wanted to keep his outdoor job, and it took him a year to train himself to keep his bg stable (no hypo, no hyper, no keto, A1c below 6.5) in combat conditions for 24 hours without any possibility to check or to get an extra shot of insulin in addition to his regular Lantus. And then he was closely scrutinized in heavy duty work conditions for half a year until he was allowed back in his job with all his licenses for vehicles and arms.

    Instead of fighting for reasonable accommodations for life & work to cope with PWDs I would like to see us join international forces to bring about reasonable education and training for us PWDs to successfully meet with ALL challenges of normal nondiabetic day-to-day life & work!
    There is no way to get there on doctor’s orders. Flashbang05 would long be withering behind an office desk too lame and too tired to just put on his shoes and run his ten kilometers after a workday on his behind. He would not even manage five without a hypo on that schedule, and to keep his bg in roughly normal ranges for eight hours with a slightly higher physical profile he would have to test and inject and eat every hour – as some of us do in such cases and many more do not and tolerate some real hypers and the one or the other hypo to go with it.

    There are many PWDs around safely keeping their bgs in definitely nondiabetic ranges in all sorts of living and working conditions and it is about time we started learning how they do it and what we could try and adopt from their handling their Ds what would be useful for our handling of our situations.
    When I read articles like your blog bit from yesterday or this one http://www.endocrinetoday.com/view.aspx?rid=27552 I cannot help thinking of someone learning to drive a car. The instructor takes him up and down the road he will take to his work place and home on end until the learner knows every bit of every bend by heart and could manage those few miles with his eyes closed. Then he is handed his driving licence. And what does happen a few days later with a change in his job and some other miles to get there? Literally translated from the way most of us get our D-regimens he would have to try and shape the new way into the mold of the old one and tolerate bumps and even crashes where that is not possible – or get a totally new regimen. – If it weren’t so absolutely crazy I would hold that it was all a great big plot to promote D and its complications to harvest on their exploding revenues :-(

    Regards, Hans

    And please don’t get me wrong: You’re doing a great PWD-job with your blog :-)

  8. Gene
    Gene April 17, 2008 at 3:33 am | | Reply

    The “protection mentality” exhibited in articles like this makes everthing much worse for the vast majority of diabetics who live, work and play in society without the need for oppressive accommodations from others.

    The non-diabetic population is staggeringly ignorant on the subject of diabetes. (The stories I could tell you from my 30+ years experience would curl you hair!) We only make it worse with laws like this that reinforce their ignorance about how “disabled” diabetics are.

    Please don’t count me as one of the “poster children” for this bill.

  9. Kevin D.
    Kevin D. April 17, 2008 at 10:42 am | | Reply

    Gene brought up a great point. If people start getting ahold that diabetics need more laws and regulations such as this how much harder will it be to obtain that next driver’s license? Are we now going to have to give the BMV 6 months of our diabetes medical history to prove that we have not had a low in that time? And if they do, how are we going to prove that the low occurred not while driving?

    Are we now going to be discriminated against for jobs that those conditions absolutely cannot be met? Like I mentioned before, a Police Officer. States will start to think the requirements leave no leeway for diabetics to be an effective police officer and will prohibit them from the job. We already can’t be pilots for that reason, so what’s next?

    It seems like when they add more regulations aimed at helping people it turns around and shows how “special” we are and that we can’t do everything a normal person can do, which is 100% opposite of what we want to obtain.

    That’s my 3 cents.

  10. Lauren
    Lauren April 17, 2008 at 12:44 pm | | Reply

    When people looked at me in disbelief when I said I planned to run the 7 mile Bay to Breakers race, I was shocked. I was asked “won’t that be really dangerous, won’t you pass out” etc. Type 1 diabetics are Olympic athletes, for God’s sake. I tell people that I can do anything I want, I just have to plan for it.

    The things people say still get to me. I’m either told that I can “beat this” through diet and exercise, etc (even though I am already a lean, active individual with a health-nut diet), or people recoil in horror when they see my needles, and think I must be “really sick” to need insulin. I give up.

  11. Edward Konosky
    Edward Konosky April 26, 2008 at 12:09 am | | Reply

    I was let go from my job more than a year age. I am 51, and living alone. I am too young for Medicare and have to wait two years to get Medicade ( maybe ) if I qualify. I am a type 2, and have had a hip replacement when I was 40. It is considered a preexisting condition or I can’t get regular health insurance, only discount insurance. I see 2 doctors every two months out of my only pocket. I would like to know if there is a insurance company out there that will cover me at a reasonable price. By that I mean $225.00 or less. Please contact me if you do know a company. Thanks

  12. Robbin
    Robbin April 28, 2008 at 6:09 pm | | Reply

    For the disabled, this hand cart may help you with mobility.

    http://www.versacart.us

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