Allies Voice: Curing diabetes discrimination
Not until we're faced with a life-altering situation do we realize discrimination exists against people with diabetes. These situations can define us or derail us. Many people assume if you have diabetes - it's your fault. If an employer witnesses you experience a low blood sugar - you're uncontrolled. If your sugar happens to be too high and you need to treat yourself - you ate something you should not have eaten. The list goes on and the stifling reality is sometimes these assumptions may lead to unlawful termination or damaging allegations. Let's unite to be part of the natural solution of diabetes advocacy and avoid nurturing the problem of ignorance. Have you been subjected to diabetes discrimination? Please share your experience to enlighten the world on how to avoid careening into an abrupt career change or a socially arresting stigma.
I know what it is like to lose almost everything you've worked hard to achieve in a professional career, Being subjected to workplace diabetes discrimination can take the wind out of your sails. Diabetes is not something that belongs in the workplace. Diabetes is what it is - a discretionary daily chore to stabilize blood glucose. Not your bosses business. Not your neighbors' problem. Not an open-invite into your personal life. Diabetes is not justification for a boss to deliberately humiliate you in front of the office.
It's a catch 22, you see. Back in the founding years of the American Diabetes Association - they encouraged people with diabetes to keep it on the down-low. They knew that places of employment were less likely to hire you if they knew you had diabetes. The ADA realized this was presenting a challenge in fundraising and awareness for the growing condition of diabetes.
With great strides - the ADA began employing measures to protect people with diabetes from discrimination. Kudos! The Equal Employment Opportunity Commission (EEOC) has since devised guidelines to protect people with diabetes in the workplace. Public schools have adopted measures to protect the safety, health, and well-being of children with diabetes. The world is gradually coming to realize that in spite of diabetes - life goes on. It always did and the song remains the same. Why haven't some employers learned the lyrics?
Every now and again - some people (companies) slip through the cracks. Call this blog a sieve for ignorance. Call it a public service announcement. Discrimination against people with diabetes is a debilitating illness.
Speak on behalf of the 20+ million people living with diabetes. Protect them from discrimination. Don't be part of the problem - be part of the solution. Have you ever been subjected to discrimination as a result of diabetes? Please share your life lesson to help educate the world and protect people with diabetes from discrimination.
If those in the Medical Establishment begin the process to change the nomenclature of those with Type 2 Diabetes to IRD(Insulin Resistant Disease) then a lot can be accomplished to stop the Mind-Set Discrimination that everyone has (both public & Healthcare employees) whenever they hear the word Diabetes.
Why did they(AMA and ANA) find it convenient to tag two different Diseases with one name?
As far as Discrimination within the work-place is concerned, I always found it best to never tell anyone(none of their business), but to wear or have on person T1DM identification. This and being responsible for your own Body can (most of the time) prevent any Hypoglycemic Falls in the workplace.
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.........In addition, it is the responsibility of organizations, such as the American Diabetes Association rather than individuals to educate and try to remove ignorance and discrimination(never happen) regarding the Diseases called T1DM and IRD(aka Type 2 Diabetes).
as far as the World is concerned Allie, they could not give a s..t. People are concerned with basics in having enough food to eat and shelter.
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From about 1989 on for a long time, I would have to get a new job every year. Forever it wa son me ersumees taht I only worked for the previous companys for exactly one year. Why was that you ask? Because at the end of that year of employment, preexisting conditions, diabetes, was covered by the insurance provided. It was not untill about 2002 that the government actually started enforcing the discrimination cause, but workign ina right to work state, they can fire you for anything and not have to tell you about it.
As soon as I became disabled and went on medicare and did not take the companys insurance, I was able to retain jons for more than the prescribed year that I was so accustom to working and then finding a new job.
It was pretty nuts excelling greatly at each job very quickly and then one day out of the blue, was called into the HR office and told that I was to be let go due to private company reasons. it was basicly the insurance company telling the empolyer that if I was kept on the job it would cost them even more for insurance and they would loose money. not to mention that workign for a company is the only way a diabetic can get life insurance of any kind.
It's all about the medical companys and the insurance companys. they got their hands in everybodys pockets.
The way to get rid of a majority of discrimination against diabteics in the workplace is regualtion and breaking up the monopoly that is insurance. It's jsut fuggin loonacy anyway. Charge big money for the policy, allowing the hospitals and drug companys to charge huge, unreasonable amounts for drugs and care, then the only way to acctually get the real cost of the care or drugs is to have a insurance company "barter" with payment for you. Fuggin crooks is what they are and it shoudl be illeagal. But what is washington full of, lawers with gold lined pockets. This is not going to stop anytime soon.
AT LEAST I'M NOT BITTER!
Robert
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"AT LEAST I'M NOT BITTER!"
LOL.......I understand,
It's all about making as much $$ as possible while having the least amount of expenses.
This business philosophy Robert, is in Heathcare,(Medicine, Doctor's visits, Pharmaceuticles) and other forms of big business.
The person with T1DM is hit with a double whammy:
A need for Life-sustaining Medications as well as a dependence on a Healthcare System that is unable to meet the needs of someone with T1DM.
..............."Like tears falling in rain."
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Can't say I've ever been discriminated against. Then again I try + go out + do normal stuff + participate + not let Diabetes get in my way* I also don't make a show of it or stuff*
I can where people would not want to publicize the Fact cuz I can see where it could be wrongly used against U in the workplace* However Diabetics kinda need for their coworkers to Know so if their Blood Sugar goes low somebody can Help*
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I'm a little bitter.......
http://www.youtube.com/watch?v=z4xQdJgVdCU
But extremely hopeful!!
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Wow dad2tara, great video! The music you chose for the background goes perfectly to how I feel inside because my son has to live with this disease. He's 16 now and was diagnosed at 8.
My son was treated differently for a period of time in grade school and it was such an emotional turmoil to see this happening. I tried to make them understand his disease but they never "got it" or never wanted to get it. I finally just went in and "laid the law down"...no compromising. This is the way it's going to be, that's it, that's all...you people of the education system work for me and now is the time that I will make sure you remember that!
They put a neon green label on his desk "DIABETIC"...I tore it off. They wouldn't let him check his blood sugar anywhere but in the office, making him walk down a long hallway when he was low, with a young buddy who was suppose to be there for him if he dropped in the hall...nope, not good enough! He'll check anywhere, any time he needs to and treat anywhere, any time he needs to. Before it came to me having to get downright nasty, I asked for help from an organization that I thought was there to help but all they wanted was for me to do a walk...they didn't help me at all with the situation at his school back then. I was literally balling my eyes out because I felt such fear and sorrow for my son and what he has to live with, I begged for help and what did I get in response...."give me your address and I'll send you a package to help you set up a walk in your town". The other organization did try to help by sending someone in to speak to the class which I was happy with BUT they left a poster for the teacher and that poster said "Diabetes can be Prevented". My heart sank when I saw that poster hanging on the wall in the hall of the school! I'm bitter towards certain organizations for not doing a good enough job educating the public.
I feel the hard core reality is that people will never understand type 1 and how serious it is, especially with type 2 becoming such an epidemic and not enough being done to show that they are two different diseases. I HATE when it's just referred to "diabetes" because most assume it's the epidemic one that's related to lifestyle issues. Wish they had two completely different names.
My son has a part time job and he's fortunate in that the boss's daughter also has type 1, so the boss understands
I think I'm just starting to ramble now, I'll stop. I'm bitter too.
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CureType1 -
Wow. It's hard to even respond to your post, the school's behavior is so offensive. And this was only 8 years ago? My hat is off to you and your son for weathering the storm of lunacy that was thrown at you...as if the condition weren't bad enough to deal with.
Kelly
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I think the key to avoiding discrimination is for people with diabetes to take control of their own advocacy, rather than delegating it to third-parties like the ADA or even JDRF. These are not exactly democratic organizations which are accountable to the people they're supposed to be serving (although I would say that JDRF scores higher on this point than the ADA). Until patients ban together and speak collectively on what we as a community need, then we'll have organizations like the ADA, which is beholden to the public companies (e.g. pharmaceutical industry) which sponsor them and effectively control what the organization says.
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Hello Allie,
My only advise as you mentioned is not to say anything at all. I never tell them anything or even mention it to them as I feel I will be discriminated against for sure. They look at higher insurance cost and think you will take more days off sick and all the rest of it. My advise is DO ASK AND DON'T TELL if at all possible. I just lost my job last week and well I never say anything about it. I had a low blood one time at work and they thought I was on drugs and wanted to fire me. Once I recovered and had a doctor write a note I explain to them to just say I had a low blood sugar problem not diabetes. This was key in me keeping that job. Please do not say anything to anyone regarding your situation as you will be denied a job if they find out for sure. Just my advise. Take care and thanks for bringing this issue up. Unemployed in California.
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I agree with your advice absolutely. Regardless of the official legal protections against discrimination, there is such a wide subjective latitude in making decisions about hiring, firing, and promoting people that as soon as an employer finds out you are diabetic, you are sure to suffer discrimination which you will never be able to prove.
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1.) I personally agree with Bettercell...
2.)As for potential discrimination, it's everyday, Allie, everyday...
3.) I hide my T1 from virtually everyone (except close friends and family of course, with whom I minimize it), and I have NEVER disclosed it to employers. I work my you know what off to stay in a relatively safe range at work (I now work nights, alone in a care facility so I have no potential help anyway), run higher if I need to, carry glucose gel in my scrub pockets and keep Coke in the office) and wear a Medical Alert and carry a Medical Alert card. I also test at least once every 2 hours.
Some people are comfortable disclosing they have T1 (most people understand that diet/oral med controlled T2 is easier to manage), but really, there is no point, and yes, you have a good chance of discrimination.
Yes, I am brittle, but I have to find a way to make it work. If I can't, I cannot do the job. Is that discrimination? Or a fact of life?
Should I be allowed to eat during exams if hypo? I need such exceptions..does this hurt or help our image?
Much of the discrimination I encounter occurs from the general ignorant public assuming I have lifestyle caused self-induced "curable" Type 2 diabetes despite being young, fit, and thin. Go figure.
I have been looking for a job for the past few months (due to my T1, I cannot work and go to school at the same time without ending up in the ER). I have a stellar resume, references, academics, volunteer work, etc. you name it. I usually have no issues getting at least a call back.
For some reason, I was not able to get a job all of the sudden. I could not understand why. At first I thought it was due to the fact that I have been in school and out of the workforce for the past 2 years.
And then I realized that I had put my Diabetes Association advocacy work on my resume. As soon as I changed the words from "Diabetes Advocate" to general "volunteer", I got a job that week (seriously).
Coincodence? Maybe. But during my interview, I WAS asked directly WHY I volunteered for the DA. I panicked for a second, than simply said that it was related to my field of study (healthcare related). Also to note, I am not sure if that question was legal to ask...but I really wanted the job!
Maybe I'm assuming, but I am happy that I answered the way I did.
Diabetes is a burden, it is not always controllable, some of us take more time off, some of us need to take breaks more, and society discriminates against us like it's in their DNA. Even T1's are always given looks of disgust as we inject ourselves or have a hypo. It's always "blame the diabetic", like it's self-validating to do so. Whenever our diabetic patient (T1) at my work has a high reading, the day shift person always says "he must be eating ice cream/cheating again!", like that's the only reason for a T1 to have a high reading.
P.S. The correct term for telling people you have Type 1 should be "autoimmune insulin deficiency"
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P.S. My heart goes out to uninsured T1's in the U.S. It is truly sad what is going on there. That said, justified or not, insurance is not the only reason for discrimination. I have national healthcare and drug plans where I live. Again, if you are T1, you are best off learning to manage without disclosing. My pump is the only thing that had allowed me to return to work. You have to find what works best for you. Do you test at least once every 2 hours? Eat snacks? In most jobs, severe lows cannot happen in the workplace without causing harm to a person, place, or thing. Like it or not, it IS sort of justified to fire a T1 for a severe low on the job, even though many of us T1's are brittle despite our best efforts. You can either do the job safely or you can't. It's a no win situation, and we need a cure.
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Allie—
Discrimination against people with diabetes—or any disease—is practiced by the lowest forms of humanity. When you work for a major university, with a dual appointment from government, you expect nothing but fairness in the workplace. Having a Ph.D., a stellar work/performance record—through the last evaluation—and, essentially, having never failed to fulfill my job requirements (because of diabetes), I was terribly shocked by my termination, especially when the university system would not stand up for me while I fought through the complication we diabetics know as diabetic retinopathy.
To make matters even worse, I tried to protect my family with university-offered insurance programs (including disability). CIGNA (the disability insurer) provided 60% of my base salary for more than a year, while I tried to regain my eyesight. After many laser treatments, I did regain my eyesight with near-normal vision.But the university physicians would not guarantee that hemorrhages would not recur. The university placed me on partial disability retirement based on years of service.
CIGNA decided to end my coverage—and forced me to go through state employment/rehabilitation. The end result was: I certainly could work at SOME JOB, most of the time. At that point, I was left with 10-years of education/training, but could not secure a job in my chosen field—no one would hire me. I secured legal advice, and discovered the university did not provide adequate insurance. In other words, the insurance policy should have stated that I was protected if unable to do my CURRENT job, or obtain a job with commensurate wages and benefits. Instead, if I could sell pencils on the corner, I was EMPLOYABLE, and therefore denied ‘disability’ benefits. After several emotion-draining years—including interacting with several lawyers—I further discovered that unless you file a discrimination lawsuit within two years (in the state of Florida), you cannot make a claim. Does it seem coincidental that the insurance company carried me almost up to that 2-year limit before declaring me non-disabled. The moral of the story here is if you have disability insurance (and diabetics should), make sure it covers you based on achievement/education/training level, rather than merely covering you if you are vegetative. Sadly, when many cannot secure MEDICAL insurance, the likelihood of DISABILITY protection is remote.
BTW, I find it difficult to root for the Florida Gators, based on their callous, discriminatory, non-supportive behavior. I had previously worked for the University of Nebraska. My experience there would indicate that institution would have provided me with a driver, a reader, an assistant—anything necessary to get through a difficult medical adventure. Basically, the University of Florida effectively stymied my career, and cost me (estimated) more than a million dollars in potential salary.
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I get angry that our supposed "advocates" encourage us to run for a cure, and walk for a cure, and bike for a cure. Does the money raised from such events ACTUALLY go to cure research? Or does it just enter the general coffers, to pay for the next fund-raising event, flowers for the corporate lobby, etc. etc.
Charitable 'advocates' have transformed themselves into CORPORATIONS, with the benefit of being labeled "non-profit" and escaping tax consequences. Is it time to call our legislators and DEMAND that mission-driven advocates adhere to their mission?
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If you thumb through any medical journal you will be horrified at all the utterly useless research being done, none of which can ever lead to a cure. I can't count the number of times I have seen diabetic charity money cited as the source of funding for research studies on the rate of fingernail growth in type 1 patients fed a diet of green peas for six months and other such pointless self-indulgence in idle scientific curiosity. Never give any money to any medical research, since it will just go to keep the surplus of otherwise unemployable Ph.D.s in medical science in paychecks. The Director of the Juvenile Diabetes Research Fund pays himself $880,000 a year out of hard-earned donations, which gives you an idea of how little he cares about a cure.
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I thought I had posted but I may have messed up LOL. On the subject of Dr Faustman I thought you may be interested in what some parents are trying to do over at CWD:
http://forums.childrenwithdiabetes.com/showthread.php?t=15353
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I am sorry, I meant to post this on another post you had about Faustman. My sincere appologies *blush*
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wow - I feel for CureType1 who's Son was 8 - I remember I was 14 turning 15 - but I can't even Imagine what younger Kids have to go thru* I know I wanted to eat Coffee Crisp + Butterfingers + Pizza + Sugar Pop + Fries n Ketchup + yes Beer + Pot like Everybody else* Type 1 Diabetes does Suck - there's no doubt about it* I do Hope a Cure comes soon - I remember my Doctor telling me that he expected a Cure within 10 Years + that was 1972 or over 35 Years ago* I've been Lucky to cope quite well but Hopefully some sort of Stem Cell Implants that our Bodies won't reject at least get us closer to the Elusive Cure so these Young Kids 2 + Up or i think even Babies have been born Diabetic don't have to deal with this Crap*
I was heartened hearing Hillary Clinton saying she won't forget all the People suffering with everything from Parkinson's to Heart Disease to Alzheimer's + of course the Mighty D!! that Embryonic Stem Cell Research holds out so much Hope + in fact Proven Scientific Cures for!!
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Tag">http://sstrumello.blogspot.com/2008/05/5-more-things-you-wont-find-in-book.html">Tag, you're it!
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