Our first experience with blatant ableism

This weekend Charlie and I went to a concert at MetLife Stadium. The venue was extremely accommodating with exchanging our tickets for accessible seats and made sure we were aware of where all the elevators were and that there’s a family bathroom and there is supposed to be an attendant there to let us into the bathroom because it is supposed to be locked.

After we went to exchange our tickets and got our first drinks we went to go into the family bathroom. We didn’t need the attendant because there was someone walking out as we went to walk in.

When we are out in public, Charlie prefers to use the family bathroom, which is also called a companion bathroom. If Charlie were to use a regular bathroom with stalls, he has to navigate a tight space on his own, which is taxing on his body because we mostly use his manual chair when we are out. When he uses a stall bathroom, he cannot close the stall door behind him and he is just exposed to the whole bathroom. So to give him the respect he deserves when it comes to the bathroom, he uses companion bathrooms.

In between two artists sets, Charlie asked me to take him to the bathroom, so off to the family bathroom, aka a companion bathroom. There was a line, that was mostly made up of young, able bodied girls. There was a water fountain next to the bathroom, so I went to the front of the line and asked if they were waiting for the water fountain or the bathroom. The girl in the front of line said the bathroom. I simply said to her “well you do know that this bathroom is meant to be a companion bathroom and that is the priority for this bathroom.” She rolled her eyes at me and let us go in front of her. But as we are in the bathroom she is starting to be dramatic and literally yelling about it “it’s a family bathroom” because of the commotion Charlie wasn’t even able to pee, felt so horrible that he wasn’t able to go.

When we were walking out of the bathroom the girl continues to tell me that it’s a family bathroom, mind you this girl was by herself. And I said to her “yes but it is also for disabled people because for some of them it is the only option for the bathroom” she goes back at me still saying that it is a family bathroom, I repeated what I said to her. She then goes to me “well you don’t have to be such a b***h about it” I responded by saying “go f**k yourself”. That was all I could say, I wanted to fight this girl so bad and I have never been in a fight in my life.

This was the first time that I have experienced such blatant disrespect and ableism in my life. The reason that I was so angry was because it was disrespectful to not only Charlie but to all disabled people. This is bathroom is a place that disabled people can use the bathroom privately and with the respect that any human being wants and deserves.

This whole situation made me so angry that I went to guest services to ask them what to do. I kept apologizing to the staff member because it looked like I was yelling at her and I told her that I am not someone who comes and complains like this but I did not want this happening to someone else. I told the staff member that I know it wasn’t her fault and I was sorry and she told me “no as the venue I want to apologize because it our fault” I told her how much I appreciated her hearing me out, she said if I see the girl again to find someone in an orange shirt and let them know.

Even after this, I was not able to calm myself down and I kept apologizing to Charlie because I was acting so out of character. I asked him if it was okay if that we go home. Charlie was more than understanding and said that if that’s what I wanted to do that what we were doing.

It’s been 24 hours since this happened and I can still feel my blood boiling over the situation. I want to be able to educate people and make change for disabled people so that someone else does not need to experience what we just did.

Spasms on vacation

Spastic Cerebral Palsy is the most common type of Cerebral Palsy. I have mild spastic CP where my left side is weaker then my right side of my body. I’ve always had stiff muscles and stretches have always helped, but it wasn’t until a few years ago that spasms started to effect me on a daily basis.

I remember the first time they happened vividly. Margaret and I were on our first vacation together in Boston in September of 2019. It was early in the morning and out of nowhere my legs just started flying up uncontrollably. Margaret woke up with me and went down to her car to get a heating pad and Advil to see if it would help because the pain was excruciating. She made a pit stop to grab food from the buffet but ended up dropping the entire bowl of cereal in the elevator, while the maid was in the elevator with her. I will never let her forget it. Anyways, after a few minutes the heating pad and an Advil worked and my spasms went away.

Following that vacation, spasms became a daily thing when my body is falling asleep, waking up, (especially during the winter and stormy weather). How do we deal with them you must be asking. Well honestly they are apart of our nightly routine now. Margaret does an amazing job keeping pressure on my legs often moving with me throughout the night so I can stay comfortable.

Margaret is not an angel, saint, or whatever else you want to call her for getting me through my spasms. It’s something that has become second nature to her and she wakes up with me each and every night to simply remind me she’s right here and that it’s only a few minutes of pain each time and it is not going to last past those few minutes. To be honest, not many people would be built for that, but Margaret has always been.