Five-Star Disability

Hi folks:

Would you like to gain a real world example of a low incidence disability in society as a whoole?

I am talking about a Deaf-Blind person in a seniors retirement complex.

This is something that I do not want to happen to me! (I better be nicer to my kids! They might cart me off to a nursing home if I take away their electronics too many times!)

To make this more concrete; I am putting you, that’s right YOU, in the role as a Deaf-Blind person.  You have blurry vision, cannot see differences in subtle colours, anything more than five feet away from you is a huge collage of ghetto art.  Plus you are completely deaf, you cannot hear someone call your name, your microwave beeping, your tub overflowing with hot sudsy water, or your kid blowing a police whistle.  You use Sign Language to communicate with.

Now, imagine you are living at a place where three meals are prepared every day for you and your lovely neighbors. That is nice right? No more cooking, tasteless food or firemen coming to your door. And you can chose something “off menu” if you happen to be friendly with the chef. Naturally, you can also decide to eat out. Still cozy, right!  Plus, as a hoot, they bring stuff to your table, on the pretense that you can’t get it yourself.  Oh they also bring you drinks, not the hard stuff, say sorry.

Now, being able to pick what you eat is very straightforward, and shows your independence streak, even if you have low vision.  All you need to do is either write it down, or point to what you want on the menu.  Then when the food arrives, you just start eating.  To heck with conversations right, lets eat!  You are starving!

The main problem, and the point of this blog, is that you are the only person out of 45, give or take, residents who use ASL.  There would be people around the room all are talking about this and that and those and whose and so forth, while you sit and can’t join in these exchanges that can last hours.  You would probably just ignore it all, but it is very isolating.  No one would take the effort to talk to you.  If Someone did, it is usually two gestures: “You Thumb-up” which can mean “Are you good?” or “How are you?”.  Your typical reply would be, “Thumb-up” and smile like a kid in a candy store.  You could, if you felt adventurous, reply with a “Thumb-down” and a sad or painful face.  Would that Someone inquire “What wrong (shrug)?”  Unlikely, that is beyond their communication ability, plus, Someone would normally scurry away before you even got your thumb up, or down, in the first place.  So you would eat almost all meals silently, while your table-mates are yakking away.

Oh sure, you have a nice apartment that comes with housecleaners, and that makes it easier all around  After all, who likes to clean?  Its tedious and boring!  Having someone there to clean for you is just dandy!  This is, again, of no problem, unless, the cleaner moves things around and not returns to proper place  And you, being Deaf-Blind, walk into the chair that should be against the far wall, crashing into the coffee table that was not returned to its customary place, then cracking your head of the corner of mystery object that should not be there at all.  (Maybe you went into the wrong apartment?!)

It is important to, if working with a Deaf-Blind person, return moved things to where they were before moved.  Put the kettle in the corner after wiping the counter, put the chair back by the table, leave the cupboard door open.  You have an memory or your room, and know where things are. If the kettle is not in the corner where you put it, it is obviously stolen and authorities must be informed!

By the way, How do you alert the authorities?  That is another pickle you have to deal with on a daily basis.  None of the staff can sign, or bother to learn.  Even if you offer to have teach ASL to residents, the staff do not participate.  You have two or three options, but mostly you would be resigned to writing things down, pointing this out, and, well, that’s it.  Kind of limited right.  How can you express your displeasure at neighbours on your floor who smoke too much?  How can you inform staff you fell in tub?  Part of the residence experience is having access to a gym, spa and hair dresser.  How can you take advantage of these things, with nice nails?  I bet you know the answer, I’ll answer in a second…

Another great thing about retirement complexes, there is always a lot of fun activities planned, some are inside; Bridge anyone?, or a trip to the supermarket to top up your private stash of KitKat bars, Rolaids or Crown Royal. Or, an activity could be really unique like a trip to the Art Gallery or a longer trip to see the Tulips in spring. I also heard there are regular trips to the casino! Well, golly gee! Sign me up!  I need to practice my Blackjack skills!

You, on the other hand, being Deaf-Blind, probably won’t go.  First, you may not even know of the activity, it may be posted in the lobby, but it may be too small print, or you just don’t bother to check it out.  Then there is that pesky thing called communication, how can you chat with others on the bus, or enjoy the chat at the Bridge table where, I do believe, you must play strategically with your partner across from you.

Oh yes, I would not like to be you, if you fell and broke an arm in your retirement home.  With no staff who can sign with you, your suffering would probably be more severe because of lack of communication.  Would staff, upon find you withering in pain on the floor of your apartment, know to call an emergency interpreter?  They should!  Not your niece, but a professional interpreter.  If I fell and had to go to the ER, I want clear information, done by a professional.

Chatting with your neighbours, staff and others in a retirement complex is part of the reason to move there in the first place right? It is part of the overall experience.  Yet, being the only Deaf-Blind in residence, it can be isolating.  Even when many seniors start to loss hearing or vision, very few take the time or effort to learn ASL.

So, how can improve this situation: Well, there are three options

• Move to a retirement home for Deaf Seniors, that would improve communication access.  These places, rare as they are, usually hire Deaf staff and nurses.
• If you can’t, or don’t want to move, the best option would be to hire an intervenor to work with you on a daily basis.  The retirement home should arrange this service, and you should not have to pay.

This blog is based on observations of a number of Deaf-Blind seniors I know, or did know, they passed on, who live in seniors homes.  I used “You” to make sure you understand what I am trying to explain, and that is: Intervenors are needed to improve the quality of life.