What is our disability called?

I guess you have to figure what you can't do and frame your response around that? I don't consider myself disabled. I do everything now that I did pre-surgery.

Sue

I totally agree with that, I do pretty much everything I did pre-surgery as well, and in no way feel sorry for myself.

That being said, I have found myself out of work a few times over the past 20 years and right now is one of those times.

I much rather tell people that I have a disability instead of telling them I'm incompetent or lazy. So when they ask me what my disability is I'm kinda stuck and they usually follow-up with a comment like "you don't look disabled".

I certainly don't consider myself disabled either. That being said, I did miss several months of work with my initial diagnosis and emergency surgery, and then I missed another 6 weeks and then 4 weeks with the subsequent surgery and takedown. I did receive some sick pay for that; it was short term disability due to illness/surgery because I was literally too sick to work during those periods. But I've otherwise never used the term "disability" to describe my condition.

That being said, unless your j-pouch is causing you to miss work on a regular basis or affecting your work performance, I don't see how it can necessarily be called a disability or how it can even qualify as one. You can certainly tell prospective employers that you missed time in the past due to surgery. You might also inquire about certain accommodations if you think you need more bathroom breaks than the average worker, though this has never been a problem with my employer, though I have a desk job and I can take my breaks on my own schedule. I can only really see it being an issue if you have a job that doesn't allow you to leave your work station unless during a designated break period. In that case you might need certain accommodations but I still don't think that qualifies as a "disability" for most employers.

I am intestinally challenged, gutless and have a hightened sense of the locality of all sanitation installations.
Sharon

Disability has a different meaning perhaps in Australia and multiple meanings in the USA, most of which have legal significance. If I take a deposition of someone and they blurt out that they are "disabled", my next question is: have you been determined to be disabled by the Social Security Administration? by the Worker's Compensation Commission? or under a private long or short term disability insurance policy? And if the answer is none of the above, and no doctor has rendered a disability determination, they are not disabled.

I do understand disability could be a "state of mind", but we do not decide cases based on states of mind, but rather on medical-legal determinations of a person's status. A doctor issues a report on the medical status, and a judge of SSA or WCC determines if that report enables the legal threshold to be met.

In Australia there is probably equivalent disabilities for purposes of the SSA equivalent, worker's compensation equivalent, and private insurance.

Otherwise if there is no determination the word has no meaning legally and I would not use it and I certainly would not use it in a legal deposition if a doctor has not determined that there is a disability as per SSA, WC or a private insurance policy. I could also get a court order to prevent the person from using that word if there is no disability determination. Or just kill them on cross examination if there is no evidence to support that status.

When I was home recovering from surgery, I just informed people I was recovering from surgery, but never specified what it was. When I was in the hospital for blockages, I just said I was in the hospital, but didn't tell them why. I don't think I've ever missed a day of work unless it was from the two reasons above, but if I did, I would just say that I am sick and resting at home. People usually stop asking questions if you just say you were home sick.

Per my doctor, we still have UC. It will manifest in different ways now. For instance, I now get tongue sores.... something I never had before "all of this".

Actually what is causing the tongue sores is not UC, but autoimmune disorder. Removing the colon removes UC, but not the underlying autoimmune disorder that caused UC.

It's a good question, Kobe. What I do is, if I'm particularly testy from being asked repeatedly about my condition, I give explicit details. When the asker begins to back out of the room looking like a deer caught in the headlights, I can be pretty sure he won't ask again. But, seriously, I usually say I had UC ( even though I technically still have it in my rectal cuff ) that I have ongoing issues despite several surgeries and that I'm doing the best that I can. The conversation comes up when my condition affects my work or other responsibilities. Other than that, I don't put it out there.

I would not consider myself disabled, nor was I when I had UC. Having an illness, chronic or otherwise, in my opinion does not necessarily equate with "disability."

I personally don't view my j pouch as a dissability. Depending on how well I know the person, they don't need to know all the details. They usually don't understand anyway.
If I feel somebody needs to know, I just say because of an inflammatory bowel problem, my insides are plumbed a little differently than most folks, and because of that I need to use the restroom more often. Just keep it simple and on a need to know basis.

I generally agree with the tenor of the replies. There's another remarkably subjective definition of disabled, also specific to the US:
An individual with a disability is defined by the ADA (Americans with Disabilities Act) as a person who has a physical or mental impairment that substantially limits one or more major life activities, a person who has a history or record of such an impairment, or a person who is perceived by others as having such an impairment.

Just say you have UC. Even though we all have had j pouch surgery, we still technically have the disease. It's with us forever.

I know people with real sad disabilities. I know some of us had it rough (or still do) but I never considered my UC a disability. Not compared to what some people go through with other diseases.

Thank you for all the responses, you guys made some really good points.

I guess the issue for me is that I'm not working at the moment and I'm looking for reasons to justify that, instead of looking for resolutions.

But to be fair to myself I don't have a job where I can take bathroom breaks at will and in some jobs I've had there isn't even a bathroom in sight. Not only that, but I am sure we are all familiar with problems some j-pouchers have regarding to difficulty of emptying the pouch and also butt-burn - These problems are magnified exponentially when I'm at work.

As for whether our condition is really a disability or not: Would you consider someone who has had their legs or arms amputated as disabled? And how would that be different to someone who has had a major organ removed?

It is possible that our surgery, for some individuals, would be impacting enough to be "disabling."

That being said, many people go back to very normal lives. I did. Twenty or so years, I was pretty "normal" as a poucher goes. No "butt burn," I've worked as a nurse since 1995, and had busy busy busy shifts, and not required the bathroom frequently (my norm is, on average, 4-6x a day, no nighttime wake ups).

Past two years have given me some "issues," but still not enough for me to even consider something like disability.

Like, consider a diabetic. They've essentially "lost" their pancreas. Some are very well controlled; some are faced with debilitating issues that go along with the disease. Not all are "disabled" by their chronic illness, but some might be. I think that's fair to say of us: majority are not, some might be.

It likely would be a case by case basis, as Scott said in his post,

An individual with a disability is defined by the ADA (Americans with Disabilities Act) as a person who has a physical or mental impairment that substantially limits one or more major life activities, a person who has a history or record of such an impairment, or a person who is perceived by others as having such an impairment.

I think the "substantial" word is the word you're looking for.

If someone had lost their arm or leg, if the loss did not affect their ability to work, they are not disabled. They might be partially disabled and receive compensation for that. This is 'disability' as it affects work. I don't think, based on your jpouch description, that you are 'disabled'. Butt burn and emptying a pouch is an inconvenience, not a disability. If you're looking for a reason to tell people why you are not working, why not just tell them you are in-between jobs? That should end the discussion. But to say that you are disabled and then not really having anything to back that up is, well not being totally truthful. Your jpouch might be causing you more problems at work because work stresses you out. Perhaps you are in the wrong job? Perhaps you need to seek medication or treatment for anxiety or stress? I think there is more going on with you than you are looking at, and using the term 'disability' is a just an easy label.

Sue

Kobe

Many of your questions about disability, as they relate to work, are questions for which the answers have legal significance that apply differently in different countries and states. There is no Americans with Disabilities Act in Australia. The ADA is a federal law that is applied in the United States of America. Your questions about disability are creatures of whatever law exists in Australia pertaining to this subject. My guess, without knowing anything about the Australian legal system, is that Australia may have something analogous to our Social Security Administration, may have something analogous to our Americans with Disabilities Act, and almost certainly has some kind of workers compensation system that is administered on a state or federal level. In the USA workers compensation is administered on a state level, while the SSA and ADA laws are federal. There is also private disability insurance, usually offered by employers as part of a benefits package.

I think you may want to see an Australian attorney specialized in this field of law. My guess is there are probably websites describing disability compensation for laypersons in Australia, if you do an Internet search.

However having a J pouch likely does not make you automatically disabled, just as missing a limb does not make you automatically disabled. There are probably criteria established that determine whether you are or are not employable, which are largely determined by laws/regulations that are applied to medical evidence. In the United States those laws do not focus on the specific condition that is claimed to be disabling. Instead they focus on the symptoms and impact of the condition and whether the restrictions created by the condition, as determined by a physician, meet the legal criteria for whether a disability exists and compensation may be awarded.

In the Connecticut workers compensation system, disability is determined by percentages. If you have a bad back from a work-related injury, you go to a doctor and he/she determines a percentage by which your back is permanently disabled. The resulting percentage is then multiplied by a statutorily designated number of weeks for that body part, at the employee's weekly compensation rate. Once the medical evidence is generated, it is a simple mathematical calculation, assuming that it is a work related injury.

It is much more complicated to get disability payments from our Social Security Administration. There is a long laundry list of factors that a Social Security administrative judge applies to the medical evidence submitted. I believe there are a couple of threads floating around on this board on this subject. However none of this is applicable in Australia, so this is largely an academic exercise until you figure out what the law is in Australia.

There are also contractual definitions of disability. For example, private disability insurance can be "own occupation" coverage, which kicks in when your condition prevents you from doing your *specific* job. Less expensive (and more common) are policies that require broader inability to work before they pay benefits.

I'd be reluctant to take a job without bathrooms - I don't think I have the body for it. That was true before my surgery, and it's true (less acutely) now. If I'm going into a bathroom-free environment (e.g. a boat) for more than a few hours I prepare for it: I eat sparingly, take a Lomotil, and try to have a contingency plan. I just wouldn't try to do it every day.

CT is looking at the legal question, and others are looking more at the personal identity question, and all of that matters, but I think it's most constructive to find something you can do well and focus on, and pursue that. I'm not very tall, so I guess if I tried to be a basketball player I'd be "disabled."

I think I might have inadvertently labeled people with J-pouches as disabled and for that I do apologize. I am aware that many of us have gone on to live very fruitful lives and what I said did come across as rather insulting to those who have worked extremely hard to get to where they are despite the road bumps. CTBarrister, I am amazed at what you have achieved despite having UC at age 9. I'm sure there are plenty of others here, and outside of these forums with J-pouches who have accomplished a great deal as well, and are an inspiration to anyone who has, or is looking to have a J-pouch.

But back to my original question, and the reason why I asked this is because I honestly am not looking for any work in the immediate future. I got sick and tired of explaining to employers my specific needs and problems: "You'll be fine, we have toilets everywhere here!", that's good but I also need a bidet and possibly access to a shower too. Honestly most of them don't care and if you are applying for a job with these demands they will cross you off the list fast. I think I'll take Scott's advice and probably find something that is best suited to me, and if I have to say what that is right here on the spot, it would be something that involves working from home so I can make my own bathroom arrangements. Of course, finding something suitable will be easier said than done.

As for the legal side of things, I am currently on a disability pension so it isn't something that concerns me too much at this point. Although it could become a problem in the future, hopefully by then I would have found something to do. So that just leaves me with the annoying issue of being judged by society, and I do agree with Suebear that I'm just taking the easy way out by labeling myself as disabled, but it isn't something I like to do or I am proud of, but I feel is necessary in my current situation as I also have issues outside of the J-pouch to deal with, such as providing care for three autistic kids, but that is an entirely different topic for another discussion forum.

I just tell people the truth: that I had my colon removed because I had UC. I don't consider myself disabled; I do consider myself 'altered', and that does have effects on my life, work, etc.

Mark

quote:

I'm not very tall, so I guess if I tried to be a basketball player I'd be "disabled."

I suffer from the same disability. Basketball is my favorite sport to play and as a fan, yet I am not tall enough to be effective as a player. I did coach basketball and I really, really, really enjoyed it, and my team did well (won the league despite not having the best talent).

Unfortunately, due to the fact that I deal with worker's compensation and social security disability payments and disability determinations on a daily basis as a personal injury attorney, I cannot look at the word and see anything other than the legal meaning- although I know that Kobe was looking at it from a different perspective.

Kobe, my UC years were very up and down but with a J Pouch from age 29 to my current age of 51 I have had a productive life. I have worked full time, and never missed much time from work because of J Pouch related issues. I see myself as a survivor, more than a success story. I believe that I got very lucky at several key points in my life, first with the support from my family, second from making the decision to have surgery when I did, and third lucking into several good job opportunities in which I was able to use the skills that I have and was given chances to succeed and more importantly getting great experience working for people who knew a lot.

Having a j-pouch does not cure UC, so technically you (we) still have the disease. At my workplace a chronic illness is considered a disability, at least for the purposes of requesting accommodations. Personally I think UC can qualify as a disability under the broad definition that the ADA has.

I don't have a problem saying I have a "disability" - not to put myself on the same level as some who have serious impediments, but let's face it - even with a j-pouch, I still don't function like a "normal" person and require some accommodation

As far as getting accommodations at work, check with your HR about their policy on disabilities. For instance, you can get accommodations at my workplace as long as you register your disability. Also, our state has a law that requires business places to give UC/Chron's patients immediate access to a restroom if you have a signed note from your doctor. I see you're in Melbourne so I'm sure laws and disability protections are different, but hopefully between your doctor and workplace you can work out an arrangement for your job. It's just unreasonable for them to require you to work without restroom access.

Each of us is different, and our lives (challenges and triumphs) are much more than our condition. I've been lucky, in that I've been able to accomplish much more since the surgery than would have been possible for me while I was ill (or with an ileostomy bag). Since the surgery I took up Japanese ju-jitsu, and now teach it. I learned to scuba dive, and just returned from a dive trip this past weekend. I still need to have a bathroom around, though.

kobe i think you might say i have chronic intestinal issues..thats what i say when it has me down and out or someone wants to know why i am such a food police eating..

and if someone goes any further i just say i am missing my large intestines..that usually stops all questions!

i did not have my colitus or my pouch during my working years so i guess if it effects your ability to perform your job it does become an issue you have to deal with. but i still would not consider it a disability..