Saturday, July 27, 2013

Stop, Drop and Roll?

 I'd like to take a minute to address something rather ironic::  home safety assessments.  While their purpose may be rather straightforward,  to ensure that I can live safely in my house, wherever that may be, I find the execution of these assessments and the evacuation plans associated with them rather funny.

 You see, back when I started having people from an agency come to help me out several years ago, the supervisors would always do a safety assessment to make sure that there were 2 usable exits inside the home in case of an emergency. Back in the day, when we had only one (because the windows either didn't open, or weren't big enough to push me through. The agency tried  to argue at the time  that it wasn't safe for people to come assist me. We argued back with “what are you gonna do, I live here.” They never tried that one again.

Fast forward about 8 years to the land of lovely college dorm/apartment living. Although the staff have been great at otherwise addressing my  accessibility needs, at the time I moved in,  there was not a new building with an accessible unit on the ground floor. Needless to say, this pissed off several of my family members  for many valid reasons, most of them going back to my ability to exit  in  an emergency. I won't say where, but I would be living on an upper floor of  a high-rise building for the next 2 years, and then subsequently transitioning to a very similar one, where I am right now.  Within minutes  of moving in, my family and I were informed of the emergency plan: get out of the room and…… wait. That's right, protocol is to wait in the landing of the closest stairwell until the paramedics come up to get me,  as they are the only ones “certified”  enough to  carry me downstairs if the elevators  are  not working. Yes, I know I'm just a huge liability for the building, but I thought there was this thing called the good Samaritan law that  protects  the 25,000 random people who ask if they can help in these situations  as I'm waiting ever so patiently in the stairwell.

 See, this takes me back. About 6 years to be exact. My middle school had 2 floors, and my classes were pretty much divided half-and-half. Not to mention they wouldn't give me a key to the elevator, but that's another story. Being that I was on the 2nd floor for about half of the day, naturally they had to devise  this foolproof fire escape plan. Let me tell you what it consisted of:
 1st, there was me, who would be transported down the 2 flights of stairs in a Hoyer sling, with a different person holding each corner. In front of these  four were 2 additional people to walk in front of them, clear the hallways, and make sure they didn't fall. A seventh person, ideally the nurse, was supposed to retrieve a spare manual chair from her office and put it at the bottom of the stairs for me to be deposited into. I remember running several drills of this routine, and basically, by the time everybody would've been properly assembled, I would have burned to a crisp if it were a real fire, which myself and my aide understood very clearly.

 So,  given this new “wait and see” policy that was obviously employed for a CYOA type  purpose, I complied  with instructions to stay put during the drills and not evacuate. This worked, except for when, on one occasion, the fire marshal actually didn't come up all the stairwells to  verify that I, the disabled resident, was not waiting on my assigned stairwell. Because of this, I didn't know if there was an actual evacuation or just somebody being stupid. Needless to say, the situation turned out not to be serious, but it leads me to question what would happen if next time I just happen to agree to let 2 of those   handsome  football players carry me down just to see what happens...

 I won't  go into detail here,  but another reason why  this policy needs to have a more practical solution can best be summed up in the outcome of another incident by 6 words of one of the staff members on duty at 2 AM: “whoops sorry, I forgot about you.” Needless to say I had some  oh so kind words with him and the manager for that one!  While I will  admit that I need to make these compromises because I choose to live in a unit that suits my needs rather than one that doesn't on the ground floor, I'm saying there needs to be more dialogue about a faster, practical way to get to the person that needs help, while using the resources available, say, like, the 200  other residents of the building. Because, you know, there is a chance that I just might want to stop, drop, and roll out of the building just like everyone else.

Wednesday, July 24, 2013

S**t My Grandma Says

Yes,  I thought  she would appreciate this title. Those of us young whippersnappers know that it is indeed a play on words from a series of YouTube videos about things that various groups of people tend to say. If you don't, look it up! And yes, she approved and even encouraged the publication of this post, so here goes, I'm trying.

In my current situation, I am fortunate to be able to spent a fair amount of time with my grandparents, which can lead to some pretty interesting conversations, and often, my rambling about  various topics, sometimes even for several hours. Here are  some of the ones that have come up recently:

1. You need to lose weight  to make it easier for people to help you,  and for you to help yourself.

While  I see and respect  the validity of this concern, it is not my primary priority to do that to make it better for other people. I see this added benefit, definitely. But that does not come first.  If a doctor was remotely concerned about  my weight, which is not the case, then I  would have something to consider. I do, however,  express the desire to be more active, now that I have more time to do so, and now that I'm not eating  cafeteria food or take out all the time. If I  help people in the process, then great,  but I am not going overboard here. I think one of the main problems is that people who are not often  upwardly mobile  have to be very careful because any small amount of change in our bodies is more easily evident  than it would be when talking about a non-disabled  counterpart.

2.  I  don't understand this whole  ableism/audism thing you keep talking about. Why  is it bad to want to walk, or hear,  or  whatever? Who wouldn't want to do that?

 Sometimes I don't understand it either. I  just learned about it probably  a year and a half ago. I don't think that  wanting either thing is inherently bad, I think the point of these ideologies is that these 2 things cannot coexist peacefully due to the power dynamic that we have. There must be some form of domination or oppression happening,   and that's the part where things start to become unacceptable sometimes. Our backgrounds  often cause us  to think that because  we were brought up in a certain way or we do (or don't do) things a certain way, that we are better or worse off than somebody else. Because we don't live in utopia, this is inevitably true.  I admit that even I am still learning about this, and I'm not the most perfect, or PC, person. Occasionally, I do still use some ableist language that I know I shouldn't, though never in direct offense to the particular group they are referring to. I am striving to find  better ways to communicate frustrations that don't include anything derogatory to any individual, but I can't promise that this will ever be completely removed from  my vocabulary. I strive to be the most respectful person I can be, but with so many different view points, conflict is inevitable sometimes. Let's face it, I'm human, sometimes I laugh at jokes. If I have personally offended or insulted anyone in any way with the language that I have used, please let me know and we can have a conversation about it.  That being said, I think we all have our ableist moments sometimes, I know I do, when every once in a while, I struggle  across a room in my walker for the sake of mobility and exercise, and so that my legs don't simply just wither away. I realize  that this is not important to some people, while it is a priority for others. Perhaps over time, it will become less so for me, but only time will tell. Even I have to learn to respect other people's different ways of doing things, and not let them influence  me unless I want them to.

3. You worry about everything too much.

  Yes, I do. So much so to the point that I finally gave up and started this blog or my head was going to explode. My parents  and family  have always informed me of  of the extra steps and loopholes that I would always have to go through my entire life just to do what everybody else does.  I know that I'm in  an incredibly unusual situation, sadly enough. Because of this, I will always have these other things on my mind, because I'm also thinking about how I could end up just like the rest of us, or what I'm doing for others that don't have this chance.  Now how  I choose to deal with this is another story entirely. So I figure, instead of  procrastination,  I may as well make myself useful, and improve my language skills while I'm at it, which also usually coexists with listening to some type of upbeat music. To those of you who say “but you're such a happy person, all the time!” I say you haven't lived with me, or  heard one of my rants.  it's true.  Just ask one of my  professors last year, during a break, I went into her office and went on a 45 min. rant about feminism, psychology, and ableism.  (If you're reading this, I apologize profusely, and thank you!)

4. Stop  being such a pessimist!

Also true.  From the environment that  I am surrounded in, I always tended to focus more on the negative aspects, or the complications of things that I'm doing. I realize that since I'm in a “special”  situation of being academically gifted, but sometimes needing day-to-day physical assistance, the support systems designed for “people like me” were not in fact really designed for people like me, who have goals for upward mobility, to make their own way in the world with a  gainful career in a field that uses one of the many skills that I do possess, in addition to needing help because I am physically disabled. These 2 things do not often come hand in hand, and some people think that they shouldn't.  I completely  disagree, and have to  figure out many things  as I go along.  As I've done that, I've encountered a lot of complications and changes that need to be made, some of which  make me downright angry. I also know that there are a lot of people in the same boat,  striving to advocate for change in many of the same ways. So, even if I do try to relax a little and have more fun,  to those that say “the only disability  in life is  a bad attitude,” I beg to differ.

Saturday, July 6, 2013

Let's get it on....or....not!

Extreme TMI Warning: Some explicit content!!! If you don't like, don't read!  I  promise very few of my posts will be this way.

Hi all,

Sorry for the long hiatus, I've had a lot of ideas  spinning around in this head of mine. And it's taken me a long time to work up the guts to let this one out. I'm bracing myself  for what may come. I promise a wide variety of posts in the very near future. But first.....

 I would like to address several articles that have come about recently, some of which have  intrigued,  perplexed, disturbed, and outright enraged me.

 Let me start by saying  that I realize that I am “different ” from the people depicted in these articles,   that I will somehow never be like them, and some may not believe that I have the right to speak on this issue. I do respect the concerns of other parties who may be involved here, both for themselves and for their children. I have no doubt that it is extremely stressful to worry about another person's well-being constantly, even as my own family does. But sometimes, it doesn't matter that I'm not like them, because in a way I am. That is not me, but all that matters is one difference and  it could have been, or might be in the future.  I am lucky to  have been given the choices that I was.

 First, there was this story that circulated  around various press outlets a couple of months ago. While I respect people's concerns for this couple's safety, awareness of their environment, ability to consent, etc. why, then, were they considered aware enough of their surroundings  to be given a marriage license?  Not that I'm saying  they shouldn't,  as I believe all people are capable of loving each other,  as is very obvious given the couple's comments here, but that is another story.

Note that the couple made no direct mention of making babies,  they are simply asking to live together as husband and wife, something that most people in this country are able to do. However, this is still a fight for many groups, including many people with disabilities. The facility claims that they would not have the necessary facilities to “supervise ” the couple if they were allowed to live together, because, you know,  the first thing  that they would do  is rip off each other's clothes and have a million kids that they can't take care of. Because two HUMAN BEINGS passing on their genes is unacceptable. Not to mention  awful, horrible, and grotesque to watch. Never  mind that they have  not a clue what they're doing. (For those that don't know me, please note the sarcasm font)

 I'm sorry, I always like to think that people understand much more than they're given credit for, no matter how they communicate.

Now,  I do realize that not everyone may be “able” to have a sexual relationship in  the “traditional” sense, whatever that means, or they may not want to, and that is just fine, because that is their choice.  But telling someone that they  can't live together based on the choices that other individuals assume that they're going to make is not a choice. It is infringing on their rights as a HUMAN BEING first.  I am saying something because a lot of these people don't often have the choice, or are so often made to feel as if they don't.

 But, you have the mental capacity to make decisions for yourself! So what does this have to do with you?

Well, a lot. If  I had a dime for every time someone has asked me about my  ability to reproduce,  I'd be a gazillionaire. First of all, It's none of their business. Second of all, if I did said activities, some people think I need to be supervised while doing them. In my case, the answer would likely be a firm NO! Third of all, this uncomfortableness with the idea has prompted some facilities to regulate the activity of other residents that live in places like these, even when their mental capacity is not called into question. So, for example, depending on the location itself,  if I ever had to consider staying in a group home situation, based on availability of accessible housing, I could be told what I could do and with whom in my own house, when there is no question that I have the right to do so, simply because I may live with other people for whom this is called into question.  Or maybe  simply because it makes the staff uncomfortable.  Now that  is just all around insulting, not just for me, but for everyone involved.  I realize  that I'm very lucky to not be in this situation, but I think about it an awful lot. That could be me......

Then, there was this one, which made the rounds more recently than the last.  I, for one, have no problem with what is being described,  as the people here obviously have very clear ideas of what they want, and are only seeking physical help in initiating the action. Now granted, I can see potential for foul play, and perhaps have more thinking to do about where the line of control lines, but I  fully support the idea that these individuals can have a relationship in whatever way possible that they desire  and that the theme of universal acceptance is being promoted.  Societal norms often tell us that severely physically disabled people can't or shouldn't have a normal  sex life, because they need to be “taken care of.” This  type of ideology seeks to change that.

Lastly, this. Ah, yes,  the sterilization of women with disabilities because they don't know what's going on at that time of the month.  Now, I do not intend for this to be a generalization, but from my own experience, the majority of people that I have interacted with that have intellectual or cognitive disabilities may get extremely upset when something changes in their  routine, which   their everyday lives sometimes depend on quite heavily. Now, again, I like to give people more credit than your average person when it comes to the ability to understand concepts, because I've seen it happen in many other cases.  If there was blood  coming out of me and I wasn't told why, I would probably  throw a tantrum too!  As someone mentioned in the original posting of this that I read, there was no mention in the article made of  any type of intervention by a doctor or occupational therapist to help the young lady adjust to what was going on, and the parents stated that sterilization was the “only option ” for the daughter.  I was informed of what was going on  at a very early age and received input from a variety of  professionals.  I know full well that it can be cumbersome  and bothersome to others to deal with if you need assistance, but I was fortunate enough to have the choice of something less permanent than I can choose to stop when (yes, when) I want children. Again, I realize that I am not “those people", so why am I even talking, because there are parents that have to deal with this day in and day out. Why, if their child will never have children? My answer, how do you know?  New things are happening every day. My biggest concern is that this is often done without any effort to inform the individual? Because,  why bother, we're not "those people,"  they'll never understand. Actually, I do understand. But, see,  what I don't understand is how referring  to us as different, as “other” somehow makes these things excusable, I just don't.

 I have been told by multiple individuals, strangers even, that people like me should not have children. Even from the well-meaning ones who completely support me, I receive an  endless barrage of questions about how I will care for my child. And not without good reason, but still, not knowing that terrifies me to no end. If that wasn't  frightening enough,  let's add in the many cases that I hear about  in which children are taken away from their disabled parent(s) or  the parent(s) are deemed  unfit to care for children. If  that isn't good enough  birth-control for some of us, I don't know what is. So, in  the end, just because I can doesn't mean I would be stupid about it. (my family can breathe now!) It will involve a lot of thought and careful planning, as well as probably a lot of time to get over my own self-consciousness and societal expectations of me. So nobody has anything to worry about any time soon!

Wow,  I can't believe I just posted that incredibly long and personal insight. As always, I welcome any (respectful and civil) comments below!

"Après moi, la déluge."
(After me, the flood.)
-Regina Spektor