Monday, April 30, 2012

One Reason Why Families With Disabilities Become Hermits

Sometimes I feel like a hermit.

Do you know how many family gatherings, birthday parties and dinner invitations I have missed because I just could not get The Girl into the home where the event was taking place? In some cases, even if I could get her IN, once there it would be such a tight space that having her in her wheelchair would be impossible. Or I'd have to park us in one corner and she wouldn't be able to move from that spot the entire time we were at that "party". Sounds fun. In other cases, the event was held outdoors but we still could not go because the terrain would not allow for the pushing of a wheelchair (like sand on a beach or rocks and pebbles in a grassy park). So I opt to stay home. Well, “opt” is not really the correct word here because I really didn’t have a choice, did I?

Just going to my dad’s house is a sweaty endeavor. The house is not crowded with people and even though it’s a smallish 3-bedroom home, there is space enough to maneuver a wheelchair within the dining/living room area which is where the front door opens directly into. So what’s the problem? Why so sweaty? Well, there are 4 short steps leading up to said front door. This means that The Girl’s power chair can’t be used because it is impossible to lift so we have to bring her manual chair (which is not as comfortable for her to be sitting in for extended periods of time). This chair is by no means light but at least it is collapsible so I can fit it in my trunk and all the pieces come apart so it lays flat. But she can’t just be wheeled into the house (4 steps, remember?)

First, the chair has to be lifted out of the trunk and assembled (opening the frame, attaching the seat cushion, backrest and footplates which could take up to about 5 minutes or so).

Then The Girl has to be lifted out of the seat of the car (try lifting over 90 pounds of wiggly dead weight out of the tight area inside an open car door, swiveling around 180 degrees and placing it on a seat that is 2 steps away without dropping it or injuring it).

Then she must be belted into the seat and leg plates and rolled across the yard that is full of roots, branches and an occasional small unseen hole (my dad takes care of his yard but it is still outdoors) to the steps of the front door. Nature is beautiful but is not conducive to rolling a wheelchair over it so you need some serious arm and leg strength!

Then she has to be bounced up the four steps, backwards, lurching up a step at a time and squeezed through the storm door and the front door, with 2 people helping with this endeavor, hoping all the while that the chair does not roll back down the steps or tip sideways and cause injury to my precious. There is option number 2, where she is physically carried across the yard, up the steps and into the house and the chair is wheeled in separately. But, again, we are talking about a wriggly, 90+ pound, dead-weight beauty. All in all, just this part of GETTING INTO a non-accessible location takes about 15 minutes of physical labor if things run smoothly. (There have been countless times where the backrest would not slide into its 4 receivers on the frame or the lap belt was stuck between the frame and the seat cushion after she was already sitting on the chair so the whole process needed to be restarted from the beginning…) When we leave it’s all the same process again, just in reverse order.

Phew! I’m exhausted just thinking about all this. And that is why there have been many times where I have just declined an invitation. Just thinking about it gets my anxiety levels up. I haven’t even touched upon what happens when we FINALLY get inside the home…
Then there are those times we get somewhere only to find that no matter what we do it's impossible to actually get inside.

Easier to stay home sometimes. If you had to do a 15-minute full-body circuit workout every time you wanted to go somewhere, right before you got into the "somewhere" you wanted to be, would it be worth it?

Stressful Small Talk

Typically, I'm a very private person (so what the heck am I doing here??). I don't talk about my personal stuff with anyone. I was just watching the show "Undercover Boss" and I am amazed at how much people will share about themselves with strangers. OK, they were being filmed so maybe they were going the extra mile for the glittery lights of Hollywood but I hear people all the time on line at the supermarket or in the lobby of The Girl's school, just sharing away...about their husbands/kids/sister-in-law's neighbor's dog's previous owner's fiance...blah, blah, blah..

Me? Here's a typical "small talk" conversation I will have with an acquaintance:
Them: Hi! How are you? How are the kids?
Me:    Oh, we're great. All doing good. You?
Them: Not too bad...I had such a migraine last night and my husband is so tired of me complaining about it, but I keep telling him, if he would just....
You get the picture. 

It is just so awkward to decide how much to talk about without sounding like I’m either a Debbie-downer or just a frigid b**. 
Them: Oh, you have a 15 y.o. too? That must be great, having a built-in babysitter at home!
Me:    Well, not really. My daughter is actually disabled so she really can’t do that. (way to bring the mood down, rockstar)
Them: (with a look of pity on their face) Ohh, I’m sorry to hear that. 

Then the awkward silence begins and I have to try to recover the conversation so they don’t feel bad about what I just shared with Them.

Or it could go this way:
Them: Oh, you have a 14 y.o. too? That must be great, having a built-in babysitter at home!
Me:     I smile and nod my head and look away (frigid b**) to try to think of how to change the topic before They ask too many questions and I have to either actually tell them how it really is or spin an elaborate lie about how she handles her little brother so carefully and Even Knows How To Feed Him By Spoon!...all with a great big kool-aid grin on my face while crumbling inside over the never-to-be fantasy. I have lots of those. Here's one.

I know people will say, "You don't have to say anything. It's none of their business if you don’t want it to be and if they have a problem with it, too bad.” Yeah, that is a fact. But I wish I didn't have to think so hard about how to respond to something so unimportant.

Am I making things more complicated than they need to be?

Life in an Institution - Where will YOU end up?

A Matter of Civil Rights

I have said time and time again, the disabled are deserving of protection of their rights not because we should feel sorry for them but because they have a RIGHT to them. The Medicaid uproar going on in Congress and local governments is not a medical issue, it is a CIVIL RIGHTS issue and a SOCIAL issue. People who have disabilities are treated as second-class citizens and even as sub-human in extreme (and very real) cases and so many times it is gotten away with because they are the least able to defend themselves. Recall the Iowa turkey plant that abused mentally disabled workers for decades. 

How would our society (yes, I'm talking about you and where you live and who you hang out with) look today if the revolution started by Rev. Martin Luther King, Jr., among others, had not taken place. When you think about how it was back then - "colored" and "white" separations, rear entrances for non-whites, standing room only for blacks, all-white juries - does it look normal to you? Does it seem like that should be the way it is? Do you, right now, today, think that MLK was a trouble-maker who should have quieted down and accepted the "separate but equal" laws because they were fine and didn't seem to cause you any problems? If you don't agree with that notion as it pertains to MLK back in the 60's then why in the world are you allowing for inequalities that are alive and well today?? Why is it that the disabled are ignored, mistreated, killed and locked away in institutions for no other reason in many cases than they just had nowhere else to go? That's ok with you?

Institution Life - Now THAT'S Living!

Tell you what -- let's imagine that you lose your job and can't afford to pay for your home or apartment and all of your relatives (if you even have a family) are too old, too busy or too broke themselves to let you live with them for free. They also can't buy you food to eat or clothes and shoes to wear. The homeless shelter is full, so you can't go there but they wouldn't have taken you anyway because you're a bit too much to handle since you have a medical condition that requires medication.
We're gonna put you in an institution. At least there you'll get the medication, right? Well the doctors there are overburdened with the number of patients they are supposed to keep track of so your file got lost and your prescription was never sent to the pharmacy and it's on hold because all the paperwork you filled out to try to get free medicine got mixed up so now it will be another month on top of the 6 weeks you've already been waiting...But at least you'll have clothes, right? Well, the clothes you managed to bring with you in your suitcase was fine but now it's been a few months and the laundry at the institution lost some of your stuff (or your roommates stole it) so you'll have to make do with your dwindling stash. Not sure what's gonna happen when the seasons change, though. At least you'll have 3 meals a day, right? MMMMMMmmmm, love that institution food! Gotta eat what you're given , when it's given to you and you better enjoy it because who knows what comes next! At least you'll have a roof over your head. Yes, 4 walls and a roof. Can't leave when you want, can't see friends when you want (if you manage to keep any), can't get up when you want, can't go to sleep when you want. Sounds like a dream come true!

Attitudes THEN vs NOW

Understand that a huuuge number of American citizens of the 1960's wished the whole thing would just go away. So many rolled their eyes and said, "There THEY go again.." So many did much worse things - lynchings, beatings, robberies, intimidating, just to name a few. Can you see yourself having that attitude back then? So why is it ok to be that way now?

"To institutionalize a disabled American costs four times as much than to give assistance for independent living. This issue is about civil rights, not about medicine. People who have the ability to live in integrated, affordable and accessible housing should have the right to do so."

-Actor Noah Wyle

Disabled among those arrested at Capitol protest