Ableism, CoMorbidities, Disability Culture, Disabled Parenting, Discrimination, EDS

Stop Your Internalized Ableism, Your Kids Don’t Care About Your Mobility Aids

Internalized ableism can manifest in many ways. Its not just some ideas about autism, it could be about any physical, mental or neurological condition as well. For those who are new here, I have Ehlers Danlos Syndrome. It effects my mobility when I am on my feet for a long time at one time.

Last week, my niece Boop came home. Two days later was the last day of Ren Fest, our local Renaissance Fair so we decided to go when all my children were home. I had mentioned to my partner that I would take my crutches to help me.

As we were packing both cars, we have two Leafs to save on gas and we are so glad we did this, I decided not to take them. My reasoning behind this is that a mom using mobility aids would hold them back. This was supposed to be a fun day for the kids. I decided against it without saying anything.

The parking was far away from the event itself so I had to walk it with four kids in tow. We were waiting for the other half of the family at the gate so we could do the festival together. I had to sit down by the time we go to the entrance.

I noticed that they had scooters to rent for $40. I decided against it because I wanted to spend the money on the kids and not myself. Instead, I used the stroller Potato was riding in for support. It is an umbrella stroller so it could only do so much. I continued to walk around with the kids.

One thing that happened was in the line to get in, Boop was so excited about everyone’s costumes and was asking all AFAB if they were princesses. One older lady overheard her and bought her a head piece with pink flowers and ribbon that is let down in the back. It made her day.

Anyway, we were walking around and I was in excoriating pain. I ignored my pain until it got to be too much to handle it. There was one attraction that the kids wanted to do. It was kayaks to the middle of a pond and coming back and we get a gold coin. It was themed as a pirate attraction and everyone who has been following me for a while, we play a lot of Sea of Thieves with the kids and my partner so we HAD to do this.

There were only two people per kayak. I got paired with bug, J with A,Roo with D and Boop with N. We were the second boat to go but before we could go there was a medical emergency with the people who went before us. She fell as she got out of the boat.

The sheriffs department and fire department golf cart showed up and it was later found out that she had heat exhaustion and she refused treatment. I remember thinking to myself that she really needs to be treated and that she shouldn’t be embarrassed if she needs help.

Soon after that, a good friend who is a local autistic Randy showed up. We were all happy to see him. Anyway, Bug and I got on our boat and I explained to him how to use a kayak because I have used it in scouts as a kid and as an adult. He did a great job. Halfway through, my shoulders were starting to hurt and I was getting really frustrated with myself because I have done stuff like this repeatedly throughout my life. Bug did an amazing job paddling for both of us. I did help but I couldn’t do it consistently.

When we got back and I got out of the kayak, I was having trouble and Randy gave him his gatorade. I was really dehydrated. I forgot those who have EDS get dehydrated extremely easily. I am grateful to him because he saved the day. I am always so worried about everyone else staying hydrated, I forgot about me. After this, I bought everyone ice cream and we walked around the festival some more. I had to go slower because the pain in my hips was unbearable but I still powered through it.

After a little while, Roo said to me,”Mom you really need to get your own scooter for things like this.” J said “Why didn’t you bring your crutches and use them.” She had that mom look on her face. She learned the mom look at an early age because at a young age, she was caring for D when he was born because their mother was doing G-d knows what.

All this time I thought I would hold them back if I used these mobility aids and obviously I was wrong. The lady who had heat exhaustion was in a similar situation. She did not want to admit she needed help and was too proud to accept it. This is what internalized ableism looks like and it can be painful and dangerous. Heat exhaustion in South Florida is dangerous because in March it is in the 90’s for temperature (Fahrenheit). Dehydration and heat stroke can happen very easily.

I could have done more at Ren Fest if I had listened to people who care about me. I learned from this experience. I am already researching a scooter that folds and can fit in the trunk of my car. If you have a physical disability, do not do what I did. I am still in pain from that day but it is getting better. You will pay for it for a long time after the event.

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