When the World doesn't Fit

I've had a few things to think about with all of this time to myself of late as I continue to find that new normal.  One of the largest difficulties for me at the moment is finding the best strategy for emptying out my colostomy bag.  The bag is attached to my skin by adhesive and, I remove the whole appliance every three to five days.  This means that I empty out the bag out the end in the interim, undoing the plastic Velcro and unfolding it out, like piping the most disgusting bag of frosting out of a wide mouth.  Sometimes this means sitting on the toilet with my legs straddled out as far as they'll go to lean over and empty it into the bowl.  Other times, I've knelt on one knee (I call that "the Kapernick" in my head) or two or otherwise squatted in front of the bowl with one leg on either side to do the same. 

And I was struck by a very real truth:  toilets are not designed for me anymore.  Apart from the awkwardness of trying to find a comfortable position to empty the bag, I tend to empty it out in the front of the bowl, meaning that it doesn't always get flushed down as cleanly as anything landing in the water in the back of the bowl.  It's a simple example, perhaps, but still a strong realization that I will certainly find other ways, too, where the world is not necessarily created with my needs in mind.  And I was also then struck by the understanding that there are many, many others who experience this feeling on a larger scale.  This, then, provoked a question:  after this surgery--and even before it--do I count as disabled?

Now, I want to clarify firstly that the better phrasing is "persons with disabilities" rather than "disabled persons"--I refuse to be defined by my disease and grant the same courtesy to anyone else.  However, I have phrased the question in such a way that recognizes that common colloquial sense of the situation.  I also know that I'm no less of a person because of some of the adaptations that I will need to make.  

That aside, this is still a loaded question.  The thing is, disabilities are just as visible as race for a lot of people.  There are prejudices and ignorant comments.  But there is also community.  For example, the Deaf Community has its own vibrant culture, and it is different for those that are hard of hearing vs deaf and different still for those that were born deaf or hard of hearing vs became deaf or hard of hearing vs someone with a cochlear implants.  Not necessarily a status or social class, but a difference.  There is belonging, and I'm looking to see if I can belong.  Where are the lines?  How do I know if and where I belong?  I know three other people with ostomies, and that alone gives us a particular bond, a fraternity, a trust.  Us four hold secrets and experiences that no one else truly understands.  We stand open to each other for questions, advice, and empathy.  Closely related are those that care for people with ostomies, those that understand by proxy if not the same visceral understanding.  A community of those with a particular kind of understanding of these needs, under a label.  

Additionally, I will have specific needs.  I might need to take a few minutes out of the work day to administer a bag change, which could be awkward at times when one-on-one with a client and I must escape or even change clothes.  I have already been working through several of these conversations with myself.  It is possible that people will not choose to be understanding about this, and I already have some strategies to document these instances to let project managers know, if it becomes an issue.  My immediate managers, of course, are already in the loop and have been very supportive.  In a different job under different management, those minor absences or additional absences for different doctors' appointments could lead to being fired.  Could I have a good case if I chose to take it to court?  What are my rights underneath this label?  I've been looking into the Americans with Disabilities Act to see what's actually there and trying to understand what could apply to me.  

And even on a basic level, just how visible am I?  There is a decided scale here, where the visibility of one's disability brings reflexive levels prejudice from ignorant people.  But on the other hand, when I see someone has a cane I think to offer assistance over rough terrain because of those visual cues.  This is something that I've wrestled many times over, that I would appreciated it if people knew that I needed help before I had to ask while at the same time I appreciate not having to have my illness factor into all of my relationships except within my control.  Currently, I'm still only as visible as I want to be.  

I'm still digesting this idea, what it can mean and what it does mean as I seek to understand and define my life as it will be.  I know I will have to figure out what that means for myself, knowing that I am always growing and otherwise don't fit in any box but still looking for the right words to explain who I am.  This one is going to require some additional thinking.