Dignity and respect

I've been able to spend a fair bit of time recently with a friend of mine.  It's always great to spend time with her, and we have some of the most interesting conversations.  She's been having a harder time of late, and I can't help being really frustrated on her behalf. You see, she is now a quad and had to go into long term care not too long ago.  This was a very difficult thing with a lot of personal stresses on top of her health problems. 

Out of sheer coincidence, we have come to know a LOT of people who have various forms and extremes of physical disabilities.  Part of it is because of the co-op we now live in, which was actually built with meeting the needs of people with disabilities and allowing them significant levels of independence in mind.  Part of it is because quite a few people I have known over the years have come down with various ailments.

Living with a disability is hard enough when you're born with it and have known nothing else.  It's hard to go from hale and hearty to having one's body basically give out on you to varying degrees.  Throw in personal challenges, relationship challenges, family challenges, etc. it all adds up.  I have tremendous admiration for the strength and resilience I am seeing, and can only hope that I have been able to help my friends out in some small way.


When a person is already in a situation that leaves them so dependant on others for their most basic needs, one would hope that the people caring for them would treat them with dignity and respect.  Unfortunately, my friend is having to struggle with this.  Most of the people involved with her care are fine, but it only takes one or two people to cause major problems.

In seeing first hand how she was being treated, I found myself rather shocked.  Being in long term care, most of the other residents are elderly and suffering from various levels of dementia.  They are often quite passive and unresponsive or, to the other extreme, unable to control their outbursts.  My friend, however, is quite young, and her health problems do not affect her mental abilities.  She has, in fact, just been approved for membership in Mensa (which she is encouraging me to do as well. She's so sweet! :-D ).  So we have a brilliant mind trapped in a failing body.  Some of her caretakers, however, seem to be under the impression that her mind is failing as well as her body.  They are treating her as though she were a child, and not a very smart one at that.  Not only did I witness condescending treatment, but later on we discovered that the person in question lied to the doctor in charge, claiming my friend had been rude and yelled at them.  I was there, and was able to say otherwise, but without an outside witness, it becomes a matter of "I said, she said."  With the sorts of patients they normally have to deal with, there seemed to be a tendency to assume that staff was telling the truth, while my friend was being another unruly patient.

That is difficult enough, but it become even more of a problem when a staff members uses their position to "pay back" my friend for having complained about her treatment.  We are talking basic care, here - like being dressed, groomed and placed into her chair.  There also seemed to be an assumption that, because my friend has so little mobility in some areas, none at all in others, she must also have lost her ability to feel pain or temperature, which she most certainly hasn't.  You can't just lean against the limbs of someone who can't move them out of the way if there is pain!

Even the simplest of things were a problem.  Did she really need to tell someone to pull her shirt down again after they removed the sling to put her in the chair?  And how on earth does someone who deals with mobility challenged people every day put on a splint backwards?  Or not remember how to put the tool for holding things like cutlery or a pen into the splint facing the right way?  This is not a once in a while thing, but a daily occurrence.

It was disgusting to see my friend treated this way by one of her caregivers.  At least my friend is able to speak out for herself.  She is able to be proactive in her medical treatment and assertive in her needs.  If she is having such a difficult time, how is it for the other patients this person is treating, who are not able to voice their discomfort?  Or are perhaps too intimidated by this person to complain about their treatment.

It shouldn't be too much to ask to be treated with dignity and respect, and it shouldn't be contingent on one's physical or mental capabilities.