Yesterday was Day Two of my girls only shopping adventures with my awesome friend in Virginia. I promised myself that while I was down here I would not allow myself to feel guilty for spending money on myself and for shopping in stores other than Walmart, Target, and the Salvation Army. The money I am spending is a portion of the one time payment I received from the Virginia Retirement System, basically a return on the money my district paid them towards my future retirement since I am now considered fully disabled. Money also went to paying for AFOs, towards my wheelchair, towards shoes to fit over my AFOs, towards a warm winter coat that works with a wheelchair, and a few medical bills as well as other necessities. Anyway, back on topic. Yesterday we first spent about an hour in Ulta which, until I met my friend, would have been torture but since her girly girl ways are contagious I am now very interested in makeup and nail polish and all that stuff. I needed to replace my makeup because most of that stuff is clearly marked with a 9-12 month shelf life and I have been using mine for about 2 years. Considering my immune system sucks, I think I need to pay attention to those things - especially things near my eyes. I do wash my makeup brushes once a month. After buying a good portion of the store, we ventured to Borders. As I was wandering around the store (I picked up the most awesome skull graffitti messenger bag for my wheelchair that will hold my laptop and is way more my style), a store worker who had already asked me twice if I needed any help stopped me again. Then she opened her mouth and the stupid fell out. "You sure are doing a great job wheeling around the store today!" She was full of some sort of combination of fake enthusiasm and pity and excitement that she thought she knew the perfect thing to say. Biting my tongue hard enough to attract vampires within a 5 mile radius, I waited until she has gotten out of hearing range before giving in to my need to respond. "And wow, you sure are doing a wonderful job walking today! Those steps are so even and fluent! Your gait so reciprocal!" Ugh!! I may be a little testy on this issue, but I hear the same comment over an over and it is a bit degrading - like it is amazing that I can continue to live my life even though I am reliant upon a wheelchair for mobility. I could understand if I was doing wheelies or 360s or other tricks, but my bag of tricks is shallow and empty. Most of the time I am pretty good about keeping the sarcasm inwards, but every so often it escapes. I need a sign for my wheelchair that says something like "Warning, Risk of Sarcasm" and "Legs dysfunctional but the brain still works". :)

Today I was feeling unusually decent in terms of my energy. I have days where I am capable of rolling myself places, and days when the trip from the bedroom to the couch is a feat of great accomplishment. Whether this is a result of the PSP (progressive spastic paraparesis/paraplegia) or the dysautonomia, or any one of the other alphabetical soup disorders I have is up in the air. I think at this point we could pick any one of them and say that yes it could very well be a cause of the variable levels of energy, of strength, and of functionality. So today was a very good, unusually good functioning day and I decided to take full advantage of it. It is a cool fall day here, with bright sunshine and a crisp breeze that causes the leaves to rustle and washes away any remnants of summer. I first ventured to the local library to get a library card, and found myself there in the midst of their toddler story time. Normally this would be precious to me, but we are entering flu season and I am allergic to the flu vaccines. Thus normally sweet and precious little children now appear as germ factories and virus carriers to me until spring slowly transforms them back again. I stayed on the "grown up" side of the library until the walking germs dispersed. While hanging out at the library I found three books I want to read, which is a very small haul for me at a library but I currently have a stack of books that I am still waiting to read left over from my birthday. Besides, it is a pretty short roll so I can go back on most decent days. Then I rolled myself to the grocery store. On the way from the library to the grocery store I encountered my least favorite feature of engineering- the supposedly accessible sidewalk cutaway that is anything but wheelchair accessible. I spent a good 5 minutes fighting against gravity and poor engineering trying to get up onto the sidewalk from the driveway of a business without either 1) dumping my chair and myself into a heap on the ground or 2) dumping my chair and myself into a heap in the middle of the road. Finally I somehow cut an angle and got traction from the grass alongside the sidewalk and with brute force and prayers got up to the sidewalk. I was more proud of that victory than I was proud of just about any other accomplishment. So I began rolling again and realized that a car had just pulled into the driveway of the gas station, and was going to be obstructing my path. Not a big deal, I would wait for the car to turn. Then the person in the car waved at me. Strange. I am pretty new to this small town, and I do not know a lot of people who would be waving at me but to be polite I hesitantly waved back. Then the window rolled down and a guy stuck his head out of the window. Now I knew I had no clue who he was, and I was not so sure this was a situation I was particularly fond of finding myself in. "Haven't I seen you at the mall before?" He asked me this, and inside I started laughing as I wondered if that was some sort of pick up line, and if so just how pathetic that line was even when compared to old and worn ones. "Um, yeah, maybe." "I'm in a wheelchair too." With those words, the walls fell down and we instantly knew - we knew a good deal of what life was like for each other. There was a connection like finding a brother or sister, like a member of a secret society or a vetran of a war. In those words he told me that he understood what it was like to be struggling with rocky sidewalks and people staring and the joke of accessibility and the frustrations and the stubborn will to not let it define you. I grinned at him and said "Oh, okay!" I know, nice response! What can I say, I am a dork?!? He introduced himself, and I introduced myself and then his turn was clear so he pulled away. With a smile on my face I continued to wheel my way to the grocery store,  no longer ashamed or angry about the battle I had waged with the sidewalk because I knew there were others who had been there and done that. I am a part of a fraternity that I never chose to pledge, that I never signed up for but that life pledged me into courtesy of SPS. Others are pledged in by spina bifida, cerebral palsy, multiple sclerosis, or spinal cord injuries among others. Once you are a member you are a member for life because you never forget your experiences and your life is changed forever. And you always respect another member because you automatically know two things about them when you meet them 1) they are facing obstacles and frustrations that are common to most everyone who uses a wheelchair in addition to their personal challenges in life that we all have and 2) they are chosing to get on with life anyway. It is a sense of not being alone, of not being the only one who curses curbs and laughs at "accessible" entrances and wonders who decided the angle of the ramp and if they were deranged or just evil and loves clear downhill sidewalks without any cracks in them and does not take little things like reaching an object on a shelf, tieing your own shoes, or taking a step forgranted. It is a fraternity you hope to never join, but if you do you are glad to know there are others there with you. Now I just need to learn the secret handshake!

I realize that I have been going out into the world automatically expecting people to know how to interact with someone who uses a wheelchair, and yet thinking back on my own educational experiences I recognized that these skills are never really taught to us in our society. I have the advantage of having worked with amazing children with special needs, and having been a vocal advocate for all individuals with disabilities, so even before I ended up with my butt sitting in the wheelchair I was fairly conscious of at least some of the basic issues. Being the one sitting in that seat has been quite an education for me, however, and I would like to share my wisdom. I should warn you that some of it may be shared with my usual sarcasm and dark humor, because this is me and sometimes the truth hurts, but it hurts less with a good laugh.

Ms. Emily Hell On Wheels Guide to Interacting With People on Wheels'

1. My IQ did not become cut in half the moment I sat down in my wheelchair. Please do not speak to me as if I am completely unable to follow a basic conversation. And for the sake of everything sacred and holy enough with the baby talk - that high pitched voice and overly false excited tone that even toddlers hate is just rude. In other terms, "Excuse me, but does this wheelchair make my brain look small?"

2. I'm in a wheelchair, not hearing impaired. There is no need to yell when you talk to me, unless it somehow makes you feel better to look really ridiculous.

3. I'm down here. Talk to me, not to whomever I happen to be with. It is unquestionably rude to ask the person I am with questions about me when I am sitting right there as if I can not hear you because I am a foot or two below your eye level. Remember, I am at the perfect height to ram into your legs "accidentally".

4. Think before you open your mouth. A brief list of comments I am so tired of hearing is as follows:
* Oh, did somebody forget you? (Yes, just like you forget a purse someone forgot a 28 year old in a wheelchair on the sidewalk. Ugh! I hear this one when I am waiting for the bus "without adult supervision")
*Who is here with you? (Gasp! I can go places all by myself without adult supervision - they do let us out once in a while!)
* You sure drive that well. (Why thanks, you sure manage walking with those legs well too!)
* Oh you poor thing... (Save the pity unless you are making a cash donation)
*Why do your feet point the wrong way?/Why are you so knock kneed and pigeon toed? (I don't mind questions about my disability, but tact people! I usually answer that I am studying ballet.)

5. Ask before pushing my wheelchair, even if it looks like I am having a hard time. Having someone suddenly start pushing your chair is very much like having someone suddenly pick you up and start carrying you somewhere. I don't like being pushed around.

6. Please ask questions, and ask instead of staring. Allow kids to ask questions. Education is always better than fear or ignorance or stereotypes. I promise I don't bite...much. :)

7. If you see me struggling with a door that is not wheelchair accessible, would it kill you to open the door? Karma people, Karma!

8. Remember that while I may use a wheelchair, I am still a 28 year old woman with dreams and wishes, thoughts and opinions, wisdom and insight, worth and value, and desires and hopes. I just happen to access the world by using wheels. Most of all, remember that in a heartbeat you could be me and how would you want to be treated.