Disability and Saying No To Social Events

After I got my hereditary spastic paraplegia diagnosis, I suddenly had to start saying no to more events. As I got more comfortable turning down events that are not accessible, I started turning down events that are overstimulating for me. This week, I will share things I turn down, ways I make some events accessible for me, and how I handle the potential isolation that comes with turning down events.

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First, I will list some activities I say no to and provide solutions I offer to make them accessible. Some of these events are hard declines, and I have not found a way to make them accessible.

1. Concerts- I stopped going to concerts. The venue is loud, the bathrooms are overcrowded, many smaller concerts are standing only, and the overall activity is not enjoyable to me. I offer other activities that are less hectic with people I want to hang out with on a different day, but I don't go to concerts.

2. Mini Golf- I struggle to do any golfing-related activity and do my normal activities, such as driving, walking, and standing. The solution I have come up with is to skip driving to mini golf and instead ask others to pick up my golf ball after each round. This way, I can still attend the event without overexerting myself.

3. Big city spaces like Chinatown, Koreatown, or any large huddle of crowded shops and restaurants. Hereditary spastic paraplegia can affect the bladder in about one-third of people, and this has been true for me. In big city areas with unclean or limited public bathroom options, I haven't found a way to stay for long periods. Similar to concerts, I mostly turn down these outings. If I go, I ask someone else to drive so I can walk around. I also ask for flexible timing to find bathrooms, even if it means leaving early. These asks are more on the inconvenient side, so it's not something I do often.

4. Scary movies- I have watched scary movies and gotten so scared that I trigger a muscle cramp in my foot multiple times. My hereditary spastic paraplegia makes these muscle cramps more common and quite painful. I turn down horror movie nights and suggest times to watch more relaxing movies, like Disney movies, at a different time.

5. Long hikes- I can do short hikes, and I can go to the gym. However, long hikes have the problem of being stuck in nature with no way to stop whenever you want, and a complete lack of bathrooms. It is too easy for me to overdo it. My solution is to suggest shorter, flatter hikes or wait for the next activity. Usually, if I want to go on a hike, those around me find shorter trails so I can join and be in nature without overdoing it.

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While I have gotten better at learning my limits, sometimes saying no to things others want to do can feel isolating. It is a bummer to miss an event that others are having fun at while I am sitting at home. I still struggle with this. I am lucky that my friend group has grown, so I have people I can call or talk to if some of my friends are off doing something fun that is not accessible for me. I am also busier with my own school as I continue with my master's degree and start thinking about continuing my education. Lastly, I have tried to form a community of people who have disabilities that I can talk to about different aspects of disability. If I had to give any advice, I would say finding a disability community, having my own hobbies and interests, and being honest when I feel isolated have been the best ways I have been able to address feeling isolated. However, I am still navigating this issue and am continuously working on it. I'm not sure it ever goes away, but learning my limits and talking about it has helped me both physically and mentally.

Thank you for reading about disability and learning to say no to activities. If you have any questions or comments, please comment on the blog, reach out at @Anniekrollblog on Instagram or Facebook, or email me at Anniekrollblog@gmail.com. I hope to see you next week!