31 May 2011

Independent Travel When Acceptance and Disabilities Collide

People who are blind rely on other senses to travel safely and independently. As a deafblind individual, I am already down one sense. About 1 1/2 years ago, I decided that my ability to reduce reactions meant more to me than what people might think about my change from a carbon filtered mask to a respirator mask (AKA gas mask). My reactions were greatly reduced though I had to be careful about duration of use because it can induce some oxygen deprivation problems if worn too long.

I love that I can go to town with Thane and come home able to still play with him after some rest time albeit a bit less energetic in my play. I am not left feeling death warmed over. I am not sent to bed for the next couple days. I am not left unable to give Thane the walks he needs or more training. Of course this is the general scope of things. There are still some exposures that do set me back but those are mostly ones that hit in my close home vicinity- ie things that expose my home as opposed to things I am exposed to when shopping or having an adventure.

What I did not realize or anticipate was that I had actually been relying on the smells that were merely subdued by my carbon mask to determine some of my safer navigation. Thane and I had some real roller coaster times during his first couple years of work. Sometimes I took errand runs without him due to health, stress level, or injuries. It was most noticeable in the absence of Thane, just how much the change to the respirator mask altered my awareness of my surroundings. For instance with the carbon mask, I still smelled exhaust and could tell how close it was to me based on intensity of the smell as I approached driveways. With the respirator mask I really have to mentally slow down and feel the changes in the sidewalk surface; paying close attention to the time its taken me to travel without altering my pace which would then alter how long it takes to get to each drive entrance along the sidewalk path.

Before I received a wheelchair with a headrest on it, my neck would never have been strong enough to withstand the weight of a respirator mask. Thanks to this change which I had qualified for even with my previous chair but rejected because in my mind I was not that disabled. Yes, I was that disabled but its all a matter of perception. I did not want to *look* that disabled. I was still dealing with a lot in my path towards acceptance of my disabilities. I was still living with continued deterioration. I would come to accept myself for who I had become and BAM! another deterioration mode would set in and the grief process would begin anew.

By the time I got my present chair though (and subsequent backup chair), I had come to terms with accepting me for who I was- at least in terms of my quad and para parameters. I would come to realize however that a lot of my acceptance issues were related to my families lack of acceptance. Oh they play a good act, but when it comes right down to the various aspects of the causes of my disabilities and/ or the sensory disabilities- lets just say they live in the land of denial with the largest font all caps one could ever achieve.

About two years ago when I was at my folks place in their yard one summer day, my dad tried to show me something clear across the other end of the yard. Their yard is the length of three yards on their back fence line. When I *reminded* him that I could not see that and was in fact, BLIND, his response to me was that if I could not see that I had no business leaving my home alone. I pointed to Thane laying at my side as I *reminded* him that I did not leave it alone but with a great guide dog! His response to me still stings but I have come to accept that he will just be this way. This is nothing along the lines of parents not wanting their children to suffer, but absolute denial. When my mom had cataracts and entered legal blindness albeit very temporary, you should have heard her carry on about her blindness! MY GOODNESS! In private, I thought it was just TOO FUNNY!

Until I could separate myself from looking for my parents acceptance of who I was, I was not going to be able to accept myself or my disabilities- especially the deterioration in the sensory side of things with my deafblindness. I really have to hand it to my friend Rox'E at The Doghouse, Let the Fur Fly blog. As our friendship grew stronger, I learned to find acceptance of the progression of my dual sensory loss but most especially about my blindness. I had called myself VI for so long- well beyond the point of legal blindness. I could not come to terms with reality- that of the fact that I was blind and the progression at that point was on a fast track.

Through Rox'Es acceptance of herself as a deafblind individual, I began to understand that I did not need my parents acceptance to find my own and thus change my outlook on who I am and could be as an individual with multiple disabilities- many of which were proof of my own tenacity and inability to let anything get between me and living my life.

I count myself fortunate to have the friends I do- they have shown me that I don't need others acceptance, only my own.


  1. Ugh. I can't believe your father said that to you. Well, actually, now that you remind me, I think you told me about it at the time. I can imagine how hurt and angry you might feel to hear that, wanting to have your accomplishments in your independence and mobility supported.
    I hope you don't mind my saying that I feel very proud of you and proud to be your friend, and impressed by your courage, in what you are writing about these days. I always learn from you, Karyn, and I hope lots of people read your blog so that they can have that opportunity, too.

    P.S. Like with you and the headrest: I just realized a couple of days ago that if I use the extended leg rests I got for my indoor chair, which I got when I knew I was really that disabled, and used them for outdoor walks with Barnum -- until my outdoor chair is fixed -- I would probably be much more able to take him out! But of course, I have been thinking lately that I am not "that disabled" anymore, so I didn't think to use them. (I cannot use them inside the house because they take up so much space and are so unwieldy, and a lot of my house isn't accessible enough, but I certainly need to use them outside if I'm going to try walking Barnum and not have big payback the next day.)

  2. Sharon thanks for your encouragement. You brought up a good point about the leg rests. My regular chair has a nice center mount footplate thats easy to flip up out of the way when I encounter access limitations in my kitchen especially.
    My other chair however has those swing away leg rests that are not very quad friendly IMO and certainly not very sturdy. As a result when I use this chair (which ironically is better suited seating wise to my needs) I generally do not use the footrests unless I am going outside with it as without the footrests, despite how easy a pull Thane now works with, I still feel like he is pulling me out of the chair. I should use the footrests more indoors but if my walls didn't look like a bumper car ride without the bumpers before that, they DEFINITELY would afterwards! smile
    I do miss the elevating leg rests. I have a set for each of my dead quickie power chairs. Too bad they won't work on this chair huh