The last week has been pretty emotion filled for me. After being added to a Facebook social group, Hub Friends, last week, I was almost immediately confronted by my ableism and my fear of encountering other’s ableism. The first three events I saw posted were things I’d love to do: Revere Beach Sand Sculpting Festival, Figment Boston and Shakespeare in the Park. I’d normally be fine doing these types of things alone, because I’d want to reduce the ableist bullshit I’d have to deal with by being on my scooter, especially from people I know. But this time, the feelings really overwhelmed me.
I feel so scared and vulnerable. I want to be a person. I want to be part of society. I want to go to events that interest me. I love festivals and hanging out with friends. I also have mounds of internalized ableism based on my experiences thus far. I don’t want to be “disabled Tamm.” I don’t want to feel uncomfortable by the discomfort others feel with me when using the scooter. I don’t want special treatment. I just want to belong.
I don’t know how to do this with my limitations. I don’t know how to bridge the fear. I do everything in my power to make my disabilities as hidden as possible, but I just can’t get around the fact that the accident permanently limited how long I can stand and walk. I’m so grateful I’ve finally reached the point of being able to stand/walk long enough to keep my physical limitations hidden in most social situations. Of course, that’s only until I can’t. I don’t know how to trust this group won’t treat me like others have. People, including those I know and love, always treat me differently on my scooter. Here’s what I don’t want:
- I don’t want to be treated as a child unable to care for myself.
- I don’t want your help unless I ask for it, though I won’t be discourteous if you offer it the way you’d hold the door open for someone.
- I definitely don’t want to be harassed.
- I don’t want to be treated as if I have an intellectual impairment because I have a physical one.
- I don’t want your fear of being disabled projected onto me when you see my scooter. That one deserves repeating: I don’t want your fear of being disabled projected onto me when you see me on my scooter.
- I don’t want to be invisible.
- I don’t want to be skipped over or stepped in front of in line because you “didn’t see me.”
- I don’t want to not be offered stupid junk fliers that I don’t want anyway but see every single other person being offered.
I so want to be part of Hub Friends, but my physical limitations and fear keep me from doing so. I feel like it gives the impression of me not wanting to be part of the group, when I desperately want to be part of it. Maybe I need to get honest and talk about my scooter and the struggles of using it socially. I probably need to find a group, maybe at Spaulding, that can help me deal with integrating back into society. It’s all so scary.
Last night was big. Lots of new people at Hub Discussion Group meant that even though I wanted to stay in Greg’s group to share about loneliness, I went to Rob’s group. I’m so glad I did. It was difficult and I cried, but I managed to tell them how difficult it’s been since joining Hub Friends. Wanting to go to so many events but feeling like the need to use my scooter prevents me from doing so. How lonely that feels. How it makes me feel “apart from” rather than “a part of.” It was really good. My sharing resulted in several others opening up and sharing how they struggle with social anxiety, being around drinkers when they don’t drink, etc. One person spoke about how they too can’t stand or walk for long periods either. I am not alone in my struggle. Most of us seem to struggle to be “a part of.” By the end of Discussion Group, I’d gone from feeling alone and isolated to being so grateful to be part of this community. While I wasn’t greeted with open arms for my scooter, Gene said he’d be okay with me on my scooter, but he was the only one to go that far. I really appreciated his comment. Despite not receiving other support for me showing up at events on my scooter, I’m glad I felt able to be vulnerable enough to share these feelings and receive some support.