Disclaimer: In no way is this intended to say that those who are in positions where they care for disabled people are not entitled to time off but merely to offer the perspective from a disabled person on its implications, the impact it has, and the feelings that go along with that. This piece is not written speaking for all disabled people but is written to share my personal truth, and feelings and be a voice for disabled people who may be feeling the same but feel alone and unable to speak up.
Traditions are beliefs or behaviors passed down within a group or society with symbolic meanings or special significance with origins in the past. The holidays are filled with traditions that as a person with a disability have riddled me with guilt, shame, embarrassment, frustration, and anger, is an altogether challenging, miserable, and overall traumatic time. Why, because it’s filled with overestimating or underestimating what I can or cannot do, complaints, neglect, and endangerment. People assume the easy or little things I am able to do are some significant form of inclusion over adapting what I want to take part in making sure that activity is accessible. The half-hearted attempts to have gatherings at my home rather than finding a public, accessible location. The lack of understanding even one’s own family or friend group has as a result of failing to see them as no different than anyone is sickening! We are different and that’s okay but not an excuse to mistreat, endanger, or abuse us in the name of family or tradition.
As an adult disabled person who has moved away from an abusive family now what I deal with is having to depend on a caregiver who “shouldn’t have to work the holidays” and “I shouldn’t be their responsibility to take care of when its the holidays because its a time to be with family” and they “deserve a break”. Well, I am sorry that I have to pee on Christmas…how dare I not be able to turn off a normal human function because you deserve the day off or shouldn’t have to put up with working the holidays! I currently live alone but that hasn’t always been the case. When not living alone but with people who were not my blood relatives they would make the effort with half-hearted attempts to include me by helping with the tree decorating only to end up complaining that the decorations were too close together or only in one spot. I am not sure what they expected from a wheelchair user unable to reach closer to the top or navigate around the tree. If I was asked to wrap gifts someone would always make sure to make comments on the way it was done either saying it wasn’t cut straight, had too much paper on the ends, or the bow should be in the corner if I had it in the middle, or the tags should be somewhere other than where I placed them. I would be asked to help with the food as if people believed I was capable and confident in my abilities to do so only to be given a peeler to peel veggies or a knife but then they would hover over me the whole time telling me to be careful. It wasn’t worth being involved or included because, for the most part, it left me feeling like I would rather be and truly was left out. Though it is better now I opted out of decorating my home as a caregiver feels it is not their job to help with those kinds of things and though I clearly see that as wrong I honestly don’t mind skipping out on holiday decorating as I enjoy it much more in virtual reality spaces.
As a child still in an abusive situation from the outside people would never have known anything as we presented in church as the well-dressed happy family that had it all together. I was the flawed burden that needed the cure or the healing and everyone felt sorry that they didn’t know how to make that happen. They wanted desperately to solve a problem so they threw money at it. When it wasn’t that it was inviting my parents out to get a break and away from me for the night. As a very young child, Christmas was pretty typical as I would be the one to put the star on top of the tree until I got too big. I was generally tasked with watering the tree as I was the only one in the house that really needed to crawl as well as pulling the gifts out from under it Christmas morning and giving them to their rightful owners. The thing that was different was Christmas letters to Santa. They always had to include telling Santa to be good to the children in the hospital and making sure the things that were on the list were things that were suitable and practical rather than wants. In some ways that killed my ability to dream and the magic of the holiday season. Plus, let’s not forget having the constant of the year Santa arrived drunk and broke my toys.
After I had a rod placed in my back at the age of ten in some ways that became an excuse for my parents not taking part in holiday get-togethers but at the same time family eventually drifted away from coming to ours because they deemed to be too much on my parents while having to care for me. When I was thought to be recovered there was more pressure placed on my family to attend holiday gatherings but having me attend also. People never seemed to realize with ice and snow plus alcohol made for a situation where I was being placed in danger. It was very similar to how the people treated me with the Christmas tree, gift wrapping, and helping with food prep. They seemed to see everything about me as different but nothing at all was at the same time. It seemed a lot easier to blame me for being the problem over accepting I was different. Reality is a hard pill to swallow, I guess.
Drinking for any reason, especially during the holidays, at social gatherings is a huge part of the culture and traditions in my local area. So, it’s not like me being carried through ice and snow or having my father get behind the wheel to drive after gatherings is entirely shocking or an infrequent, new concept, but the failure to realize how that puts a disabled person in even more danger than the average individual and the lack of awareness of such things definitely is. Family gatherings, as a disabled person, come with a unique set of circumstances that greatly impact how we feel about the holidays, can/are for many reasons traumatic, and most definitely impact our mental health.
Hi, my name is Destiny and I am a Certified Tauma Recovery Coach. I have a disability called Spina Bifida and I am also a trauma survivor. As I am not a person who particularly likes face to face interaction my writing is a vital part of what I do for my own mental health as well as professionally. Being a person with a disability has developed into coaching those who are also survivors of trauma and are disabled similar to myself. I do this using a virtual reality platform called Second Life. I also own a website and blog to help advocate, education, and rise awareness about disability, mental health, and trauma within the context of disability.