Ableism

So, I know it’s been quite a while since I dropped a blog post. I actually have been thinking about switching to story posts just because it has become so hard for me to write.

There are some things that I really have wanted to write about and just haven’t had time and energy. In general, it takes most of my energy just to be able to work. If I add in family commitments, I usually find myself struggling and redlining.

But, of course, I don’t want to not do things for/with my family and friends. I love them and I have missed them and I am finally getting to see them again.

So, of course, I am in quite the quandary right now.

I recently visited my 90 year old grandmother. I was there partially to visit and partially to help her with my grandfather’s estate. But, I just loved being there. I have missed my grandmother so much.

But, now I am overloaded and backed up with work, struggling mightily with brain fog and exhaustion and overall feeling once again like I can’t do my life anymore. But, that’s become a more or less chronic complaint at this point.

I don’t really have answer for it. So, I am just trying to do my best for now. It’s all that I can do.

Sweet Jesus, I need some more rest though. I’m also out of modafinil, 1 of my 2 stimulants that help me function, and I can’t reach my neurologist.

But, none of that is what I’m actually here about. I’m here and finding the time to write again because I just can’t stop thinking about ableism right now.

Having functional myoclonus and long covid has launched me into a world where I have learned a lot more about disability and chronic illness and the way it is handled in this country. And let me tell you, it is messed up.

The two big things that are just not sitting right with my soul right now are how many people assume you’re faking if you don’t look stereotypically sick or disabled and the utter lack of resources there are for those who are chronically ill or disabled.

My recent trip is honestly what has brought all of this into my mind. But, I have been dealing with these issues since I first developed my functional neurological disease and my 1st blood clot.

When I got my 1st blood clot, I got my 1st cane. I remember the stares that I would get. I remember the 1st time that I used a motorized cart in a store. Most people stared, one guy out-and-out asked me what someone so young was doing in a cart. I remember how embarrassed he looked when I explained.

I remember when I had my 1st bad myoclonus flair at my new church and the priest asked me what was wrong. I tried to explain. He responded “okay. Whatever that is,” and just looked like he didn’t believe me.

I remember walking to CVS, starting to have an attack at the store, and having to pull out my collapsible cane. I felt the pain of having to use it as well as the eyes of those staring at me. I even heard the not so quiet whisper “she didn’t have a cane a second ago.”

I also need mobility assistance at airports. The distance is hard for me because of all of my conditions. But, nothing feels worse than needing that assistance. You hate that you need it in the 1st place. You hate that your body can’t just do what everyone else’s can do.

But, I also find myself worrying the whole time that people are judging me or staring at me, wondering what is wrong or if I am faking.

I have learned that people not understanding the array and spectrum of disability and that some disabilities or illnesses can be invisible leads to a lot of shame in the disabled community.

Now that I am tuned into this issue, I found that I am nowhere near close to alone. A lot of people intentionally don’t use mobility assistance or other aids that they need because they are afraid that people will stare at them or attack and accuse them of faking because they don’t immediately appear disabled.

Not enough people know that you can need assistance but not all the time, need a wheelchair but still be able to use your legs, feel very sick without appearing very sick, and/or be very sick but not be sick every moment of every day.

The other huge problem with ableism is lack of assistance and resources. That has been coming up over and over for me too.

Let me tell you, though, American Airlines is ableist as hell. My experience with them was terrible and also eye-opening.

On my return trip from Texas, I requested wheelchair assistance. I needed to get my bag and then get to another gate and switch to another airline. The person showed up, literally wheeled me 2 feet, and then told me that I was on my own from there.

By the way, airline wheelchairs can’t be moved by the person sitting in them. Someone has to push them.

That was my trip from Texas. My trip to Texas was even worse.

Again, I had to switch airlines. The Delta employees kindly wheeled me to American Airlines. But, when I got there, I had to get out of the chair.

The Delta employees wheeled me to the side of the ticket line counter. I was then immediately yelled at by the ticket counter workers for “cutting the line.” By the way, there was literally only one other family in line and I wasn’t blocking them from reaching the counter.

I had been struggling with my myoclonus since I got off my last plane. I have been doing fairly well with my symptoms lately. But, the stress and exhaustion of travel had made things difficult for me.

I started jerking uncontrollably and was having difficulty maintaining my balance. So, I went to sit down and take my pills . My mom went to the counter to try to get wheelchair assistance and to get my boarding pass.

They argued with her and tried to make me come forward to the ticket counter anyway. They only stopped after my mother yelled back at them that I was currently seizing uncontrollably.

They treated me horribly and I shudder to think how they treat others who are handicapped.

I’m getting a clear view of how the world treats disabled people and chronically ill people and it’s disgusting.

Now that I know better, I’m going to do better. And now that I am a part of this community, I will be using my voice to raise awareness to these issues wherever I can.

#functionalneurologicaldisorder #longhauler #voicesofthevirus #longcovid #disability #chronicillness #fnd