A very important discussion, guys. I took the liberty of summarizing your comments over at http://www.diabetesmine.com/2007/09/but-i-dont-feel.html.
Have a look and let me know what you think on the blog post.
Best,
AmyT
www.diabetesmine.com
Much as I don’t want to label myself or others, or use diabetes as an excuse for things that are within my control, I do think that people with diabetes need protection under the law. I’ve been fortunate to have never experienced severe discrimination related to my diabetes, and have worked with and for genuinely caring and reasonable people. But the law is not designed to protect us from genuinely caring and reasonable people, is it?
I’m certainly not an attorney, but it seems to me that diabetes is a disability based solely on the first prong of the ADA test: “a person who has a physical or mental impairment that substantially limits one or more major life activities”. So far I don’t have any complications and am living an active and full life. At age 41, and with close to 15 years of diabetes “experience”, I’m currently starting my own business and training to run my first half marathon. But pretty much ALL activity comes to a stop when I have to treat a substantially low blood sugar. I cannot drive, converse intelligently with a client, trust the work I do on my computer, continue running, etc. So I am very disabled AT THOSE TIMES. Problem is, we don’t know when those times will happen. It seems somewhat similar to Epilepsy in that way. Via the magic of Google, I see that Epilepsy is considered a disability. Also interesting that some types of seizures have symptoms very similar to those of a low blood sugar episode.
Comparing diabetes to epilepsy is disconcerting to me. While some aspects are similar, I do not want restrictions, such as the ability to drive, to be placed on me. My fear is that when you start viewing it as a disability in it’s own right, you subject yourself to the possibility of losing opportunities as well.
For the most part, I agree with Progress Trumps Perfection, but there is such a fine line between rights and discrimination, it just makes me nervous.
I have type 1 diabetes, and as Progress Trumps Perfection says above, MOST of the time it is not a disability. But I work in the computer field, and most of the people at my level have been send out to our contractors office in India to deal with some problem or another. One of these people got quite ill, and it took nearly two days for his coworker to track down an aspirin - eventually ending up with an unpackaged, unlabeled single loose pill bought off what passed as a drug store in that town. Needless to say the coworker was afraid to take it. What if he had needed insulin, not an aspirin?
After hearing their story I immediately went to our HR department, and voluntarily “self-identified” as a person with a disability (although everyone I work with already knows I have Type 1) to specifically state in my record that I was not going to travel to India, although I was OK with travel to countries with readily available pharmacies and emergency rooms. I am glad to have legal protection to be able to refuse to put myself in what could be a life jeopardizing situation. And yes, I am aware that there are type 1 diabetics in India, that many people can and do travel there with insulin - but I would prefer not to put myself in that situation if I can avoid it.
I am very surprised to hear anyone dealing with diabetes say that. Although I don’t consider myself disabled, the Americans with Disabilities act has helped me on more than one occasion. Yes, I am a normal person and yes, I can work a full time job. However, I work in an office that has very strict attendance policies when it comes to lateness. If I have a morning low that prevents me from driving and getting to work on time, the ADA keeps me from losing my job over it. I think that’s a good thing to have.
My mother happens to work in an office where you cannot eat or drink anything of any kind at your desk. So does that mean that there shouldn’t be an exception made for someone who needs to eat or drink to combat a low? Should the employee dizzy and confused from hypoglycemia be forced to walk out of the office to the kitchen to treat their medical problem? I don’t think so.
I am not a victim, but if the ADA keeps me from being fired for things I cannot control, then call me disabled. It’s not like I am asking for special parking.
We can’t have it both ways and reject the label of ‘disability’ yet expect the protections afforded the disabled under laws like the ADA. Nor does saying ‘sometimes disabled, sometimes not’ help anyone with diabetes.
Take the case of the diabtetic who does not have complications which are clearly and outwardly disabling - loss of sight, loss of a limb, severe neuropathy, hypoglycemic unawreness. This person, who looks just like any other person, has to alter his lifestyle to accommodate his disease AND is potentially subject to discrimination from others if he reveals it.
Education is certainly required, but legal protection is also necessary. Should African-Americans have relied upon education alone to protect their civil rights? I don’t think anyone woud argue that education alone would have reduced racial discrimnation to the extent it has been reduced.
I’m not saying anyone is justified in playing the ‘diabetes card’ to try to get special treatment or move to the front of the line. But if someone does them wrong solely because they have diabetes, they should be able to have the weight of the law behind them for protection. The pupose of anti-discrimination laws is not to grant ‘special rights’ to people, but to guarantee that they have the same rights as everyone else.
It’s unfortunate that the word ‘disability’ has so much baggage attached to it, but the fact is that under current law that’s the category we fall into - and it’s also the category that protects us from discrimination. So to put a very fine point on it, although I may not consider myself ‘disabled’ and I may not look or act disabled, legally I have a ‘disability’ and I’m not offended by it.
I’m going to swallow my pride a bit and admit that my initial views on this topic were probably influenced more by my visceral/personal reaction to the word “disability” and less by reality.
You’re right, Terry, we can’t have our cake and eat it too. If we are to accept protection under the law and expect accommodation at places of employment and our schools, we must also accept the categorization of our disease. I’ve spent quite a bit of time since this topic was first posted considering my view, talking with others, and reading the responses here. My initial reaction was that I have this disease, I manage it myself, I prevent it from interfering with my life in any meaningful way the majority of the time, and I don’t need the law to protect me. I see now the error in that view because even with exceptional control of my condition, I cannot control how others will interpret my limitations.
I’ve been incredibly lucky to work and live in very comfortable environments where my disease is understood and not believed to be a barrier to my success. But I know not everyone is so lucky, and that someday my luck may change. I’m comforted by the fact that there are protections in place so that I can have the opportunities that others would have, without limitation.
But I will also reaffirm my belief that ultimately the key to total inclusion and acceptance comes with education. Education not just for those who live without this disease, but for those of us who allow diabetes to control our lives. Education for those diabetics who don’t understand how to manage their disease or the consequences for not taking control. Education for those diabetics who give up and accept their fate as inevitable. Its disheartening to know that a very large portion of diabetics who have access to care still don’t test their blood sugar even once per day, or seek out basic medical care. We can never expect total acceptance if we don’t first take total ownership of our own health.
You and others, Terry, have really forced me to think about this issue, and I thank you for your persistence and dedication. I’ve only been a part of this community for the last week or so, but already I feel its influence in my life.
It’s been a while since this discussion first started. It came up while looking for something completely unrelated but I wanted to know how our new members since October felt about this topic.
I have to think about this and come back…
I want to make sure I say the right thing…
I am sure most in totally good control of their faculties (not depressed,etc) could fend off a few co-workers or teachers saying that one “should better control my bloodsugars so I don’t go high or low during work cause my co-workers are annoyed by it. (wtf? I sometimes cannot control everything with my b/s levels it’s not a perfect disease)”…but if this person is in a position of authority …and can stall your career, demote or cause you to be fired it a little different isn’t it?
Should you legally be able to be fired or held back for something you can’t control? I could go on and on…
but in the end–it is protection many of us NEED, because people of authority can/do/will use just about anything in some circumstances; even being illegal doesn’t stop some, but some protection is better than none. Even with this “right ot protection,” it is a fight many are too tired/ashamed/afraid to make… there is room for a lot of improvement here—not just for diabetics…a word should not derail progress achieved…slight as it may be…
If you re-think of disabled/handicapped as a legal status, instead of defining you personally, maybe is is not a threatening?
I’ve thought about this subject a lot through the years and seen a lot, as others have and I finally came to the conclusion that Yes, it should be considered a disability. No matter how Good the control, a Diabetic is never in Perfect control and at least 1/3 are in sub control, affecting most of their activities.
Granted many non-diabetics are affected by other situations which can play havoc during their activites also.
Diabetics are not at all near a level playing field as most non-diabetics(unless they have another deadly disease)since they have such a variety of options of hurting themselves or dying and are predisposed to so many other conditions/diseases.
Just because a Person with Diabetes can climb Mount Everest or play on a NHL hockey team one day doesn’t mean he won’t pass out and cause an accident from simple lack of sugar or too much exercise, the next. Intentionally commiting suicide has crossed most Diabetics minds at least once and some have acted upon it. They may take 2 shots of Insulin because they forgot that they already took the first one and end up unconscious. Or some become too accustomed to their pumps or are too busy to test and push the buttons, thus ending up in DKA or Coma. So many can’t even afford their drugs for God’s sakes. The list goes on.
Thousands and thousands die every year and the vast majority are not dying from old age. They shouldn’t be dead. Diabetics should be getting the proper help and attention that they deserve. Perhaps on a Disability Program they would get the proper care and at least their needed drugs and Dr. appts.
I was on disability years ago for RA when my Kids were younger and Thank God for that. I really appreciated their help. That was a rough time. I don’t need it now for RA or Diabetes. Maybe someday again, I will. Who knows.
Being disabled is not a dirty word nor does it make someone a second-class citizen. Many People on Disability pension also work part time jobs to help them physically and to keep them involved with society. I feel that being on a Disability Program is a helping hand when you need it most. If a Diabetic does not feel that they need to be on a Disability Program, then more power to them. But there are a lot of People with Diabetes who should be/need to be on it, so that they don’t end up in a hopeless and depressing situation and possibly another statistic.
Off my soap box.
Tim I could not agree more! I know if my bg was so high it could not be read…
I would sit down in the car… bolus… and check my bg every 15 min until it got to a safe level?
But hey that’s just me.
I agree whole-heartedly with Tim. I don’t look at diabetes as a crutch, without it I would probably throw my health to the side like so many men do. I would venture a guess that most diabetics my age take better care of their bodies than non-diabetics do. I mean give us a break. If someone says I need my glasses to read this or I need my glasses to see do we write them off as disabled? Why is it frowned upon when we need to check our blood sugar or take an injection? We’re doing it so we don’t hurt ourselves similar to not crossing a busy street without your glasses on. I never have and as long as God allows it never will file for disability. I will leave that to those truly in need of that support.
Whew! My two cents!
I agree that diabetes can be disabling condition, especially when not allowed to properly treat the desease. If a company, school or employer do not allow someone to use the necessary tools to manage their diabetes, they could become acutely disabled with either hypo or hyper glycemia and end up temp. completely disabled. In the long run, policy or rules which restrict persons from properly caring for their desease or condition would be violating the A.D.A.
Unfortunately, a can of coke or pepsi is usually not allowed to be brought into an event for both security and business reasons. I think Amy had the right to ask to bring in the pepsi. I think on both sides, the battle picked was an over reaction. Water could have been either purchased or found for free in the concert and would have been a better remedy then a beverage with caffeine in it, which ultimately acts as a diaretic and can prevent optimal hydration in a D.K.A. situation.
I’m glad to see this discussion being revived. I have been a T1 for almost 30 years now. I had worked for over 30 years before I started having severe lows at home and work. I don’t feel that I was discriminated at work although the company did not offer to help find a job that would have been less physically demanding. When I was experiencing a low I decided that I just needed to quit and left. After realizing what I had done and talking it over with my wife, I asked if I could come back to work. They agreed but in the meantime found a replacement for me and I was let go two weeks later.
It took me two years and the expense of hiring attorneys to get SS Disabiltiy. We were fortunate to have family and friends help with expenses and mortgage until I started receiving payments. My wife has graciously accepted being the “bread winner.”
I would rather be working. At my age now, 54, I can still do many activities. I know people look at me and wonder why am I not working. The best I can do is explain to people who don’t understand the disease the challenges we face every day.
I am ready to answer this question! I think it should be considered a Disability but case by case only.
I just found myself wondering this only because of a low I had recently which made me late for work, and the resulting tone taken by supervisors to, “make sure you’re taking care of this.” Not of myself, I noticed, but of “this,” apparently of my being late. To them, I noted it’s rare, that I’ve been late to work a total of 3 times due to low blood sugar (I still don’t use “hypo,” I’m a dork) in my 20+ years of working, after I’d noted that it is a rare occurance. It in the end did feel discriminatory given that I worked late that day to make up for the time I’d been late, so, there was no work suffering happening, yet this tone, on that and on following days. Overall there seemed to be a lack of personal concern and a generally harsh and removed tone they had that made me wonder what others may encounter, and if they’re talking about it here.
YES! Absolutely. Not to say we are UNable, but to protect our rights!
YES! I told my Hubby many years ago that it should be considered a disability. Even though it is controllable to a Good extent, it takes effort, time and cost. Plus a Diabetic can end in complications and supposedly a 10-15 year’s range less of Life which a non-Diabetic doesn’t have to worry about. (Not sure how they calclate that). Can’t get Insurance because of Diabetes(pre-existing usually). Uneven workfield also.