Wheelchair Observations (and Frustrations)

I know I’ve already posted today, but an event at the pharmacy made me realize that I needed to both vent, as well as discuss, my experiences with the chair thus far. What I’ve noticed is that people tend to fall into two categories when they see me in my chair: the first category is those that see me, make some sort of awkward eye contact, maybe say hello, and then run off. The second are those that clearly have seen me, but pretend they haven’t. The levels these folks go to ignore me includes even crossing a street to avoid me, then crossing back once they’ve successfully avoided me. (Yes, this happens, and the fact they think I don’t see them is sort of anxiety provoking.) Very few people treat me like they do others around me. It’s such a welcome respite when it finally does happen. (There are also those who know me, and freak out thinking I’ve been in some sort of accident. I have to explain to them how tiring walking is for me, because there seems to be this lack of knowledge…more on that later.)

The people who ignore me contains a sub-group that I find absolutely infuriating. These are people who not only ignore you, but ignore you to the point where they literally infringe on your space or rights, because not doing so would mean acknowledging your presence. Today was a prime example, and I finally decided to speak up for myself. I went to the pharmacy where a man with hospital bags was waiting for his prescription. I had Ky, with me, and my chair, so I staid off to the side, respecting his privacy and his space. The man was asking a lot of questions, and was somewhat aggravated, so I ran through some practice with Ky to keep him focused. (We had an incident where he was attacked at this pharmacy by a man with mental health and substance abuse issues, so I try to keep him on a specific task so we can work on overcoming discomfort. The pharmacy knows this, and has given me permission because they know that I would remove him should he bark or lose proper focus with me.) Anyhow, a woman came up behind me and avoided eye contact. It was clear that she was waiting in line for the pharmacy window, too.

Here is where things got aggravating.

Someone asked politely if they could pet Ky, I thanked them for asking but that he was working. I had chosen to go to the pharmacy while on a routine walk, so he wasn’t wearing any gear. The man was still talking with the pharmacist, and wanted his paperwork after all (even though he said he didn’t, and the pharmacist had thrown it out.) I maneuver the chair, and it is abundantly clear that I am going to the pharmacy. In fact, I had to move my chair to make enough room for Ky and I to both fit when the man finished and was ready to exit.

During the time while both of us were waiting, I moved to let her past in case she was trying to get down the aisle. We made eye contact, I smiled moved aside, but she broke eye contact quickly, and didn’t move. At this point I still stayed in line, but tucked Ky behind me a bit so we could kind of be more compact.

The man finishes his random rambling, and I go to move forward, when the woman darts around me, and goes up to the window. She doesn’t acknowledge me…at all.

Now I would say she was confused, except we were all waiting for quite some time. She knew I was in line. I’m not sure if she thought she just had to ask a quick question, and could run in front of me, but there is a separate window for that purpose. She also didn’t state that she just had a quick question. She didn’t address me at all. This has happened to all of us at some time, and usually when someone doesn’t know if you’re in line, they ask, or if they have a quick question, they will say so. This woman flat out banked on being faster than me, and on me not saying anything.

I did say something. Even though the pharmacist knew I was waiting, she didn’t say anything, which annoyed me because the regular pharmacists there all know me and would have spoken up. In any event, I politely blurted out, “Excuse me m’am, but I’m next.” She turns, makes eye contact briefly, then turns back to the pharmacist. Finally the pharmacist tells her that I’m next, and I’m allowed to pick up my prescription. All of this was amplified by the fact that my prescription, a seizure drug I’ve been on for years, wasn’t filled for over a week. My doctor’s office tells me today, when I call to complain, that it’s because I have to be seen and haven’t made an appointment. Nobody told me I was due for one…

My anxiety over using the chair, even when I do need it, is super extreme. I have pushed through that for the sake of my dogs, and because I can’t stay locked in my apartment forever. It will take time to build my strength back up, and in the mean time, I’m going to need some help doing some things. While I knew there would be those who looked at me with curiosity of some sort, I hadn’t expected people to act as though I didn’t even exist. She wasn’t an isolated case, though her actions were by far the most blatant. There are people who closely elevator doors, or cut me off on the street. There are people who have group conversations, but don’t include me even though I’m in the same elevator or walking with the same group.

One of the more awkward things has been people who don’t understand the reason I have the chair. There is this assumption that only people who absolutely cannot walk, need wheelchairs. I need a wheelchair for a variety of reasons. The main issue is ataxia and muscle weakness. It takes effort for me to keep my movements coordinated. Even if I’m not actively thinking about keeping my movements coordinated, I am. If it’s hot, or if I’m tired, it’s just amplified. Other issues include my fall and fainting risk. Whether it’s from not being able to eat enough, my chronic dehydration, or my body’s inability to sort out what to do with my blood pressure and heart rate, certain situations just don’t bode well for my ability to any onto consciousness. I’ve had people think that I want the chair, or that I’m exaggerating, but the fact is I hate needing it. I’d prefer to walk along with my dogs, and my phone, and my friends. Relying on a machine, in a city full of potholes, is scary. I’m also still prevented from joining in on some things because the chair can’t go in a car. I would have to take a bus or trolley while my friends took a car, and if that event is the beach? Well we better park close because my chair can’t get wet or sandy.

Someone told me once, on a day I felt like death, that I looked like I was doing better. I almost burst into tears because the woman was a leasing agent at my complex who was extremely judgmental of my growing need for reasonable accommodations, despite the low cost involved in making those accommodations. I wanted to shout at her that it had taken me forever to do my makeup, but that I wanted to feel pretty because I was in so much pain and having such bad nausea. It felt like I had to give in, and look as sick as I felt, for the complex and that woman, to take me seriously. The same thing happens sometimes with my wheelchair. I feel like I have to appear to be something I’m not, just to appease folks who want that stereotypical situation.

Today was a big step. Today I told the woman that it was my turn. I stood up for myself and made my presence known. Maybe I should thank her for waking me up!

Wheelchair Observations (and Frustrations)

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